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Histio Educational Opportunities
One of the primary goals of the Histiocytosis Association is to provide the Histio Community with information that can help you better understand histiocytic disorders, their diagnosis, treaments and possible long-term effects.
Beyond the Diagnosis Podcast
The Beyond the Diagnosis podcast was created to give patients, families, caregivers and other members of the Histio Community the opportunity to have access to another educational resource to help you on your histio journey. This podcast provides an additional platform by which you can consume information while on the go or if you're unable to remain in front of a computer for an extended period of time.
Our vision for the Beyond the Diagnosis podcast is to extend our reach farther and wider and be able to get important, timely, and relevant health and lifestyle information to the Histio Community. We strive to explore topics that are “beyond the diagnosis,” or on the outer edge of what one would expect to hear from a rare disease podcast. We want to answer the lifestyle and overall health questions that you have - and the ones you didn’t know you had.
Tune-in with our Beyond the Diagnosis host, Kathy, and special guests! Listen below or on one of the following popular podcast streaming services: Apple, Spotify, Google, Breaker, Pocket, and RadioPublic.
About this Episode: In Episode 7, Kathy sits down with 4 very special guests for a panel discussion about the importance of raising awareness, what different organizations are doing during Histiocytosis Awareness Month, and how you can get involved.
About this Episode: In Episode 6, Kathy sits down with histio patient, Carol Fragoso, as she shares her inspiring story of accepting and overcoming the obstacles that histiocytosis has caused in her life. It is a story of hope, encouragement, and paying it forward.
About this Episode: In Episode 5, Kathy puts her knowledge as a health coach to use as she talks about the effects that stress can have on the body and gives practical tips on how to mitigate those effects so you can live your life in the most happy, healthy and fulfilling way. Fill your toolbox with tools that you can employ at any time to help bring your mind and your body just a little bit closer to a state of balance while dealing with something as difficult as histiocytosis.
About this Episode: Episode 4 is an interview with Jamie Sullivan and Shannon von Felden from the EveryLife Foundation about the STAT Act, the upcoming Rare Disease Week and the impact that both of these initiatives have had and will have on the rare disease community. We also welcome Deanna Fournier, Executive Director of the Histiocytosis Association as she shares about the Association’s involvement in several of EveryLife Foundation’s working groups.
About this Episode: Episode 3 is an interview with the President of the Histiocyte Society to learn about the work that they're doing and the vision for the future.
About this Episode: Episode 2 is a look into the Histiocytosis Association, staff roles, and future vision for the organization with Executive Director, Deanna Fournier.
About this Episode: Welcome to the premiere episode of the Beyond the Diagnosis podcast where we strive to bring you useful and timely information to inspire and encourage you on your journey with histiocytosis. In this episode, learn a little bit about your host, how the podcast came to be and what you can expect from future episodes.
Webinars
Previous Webinars available to watch on-demand. Scroll through to view all of the available webinars on-demand. To hear about upcoming live webinars and availability of new on-demand options, sign up for email alerts, or follow us on Facebook.
Educational Video Series
The Histiocytosis Association is pleased to present a collection of educational videos highlighting common questions about histiocytic disorders, their symptoms and treatment. The videos feature 13 physicians and scientists from around the world who are leaders in the field of histiocytosis.
Videos are available for online viewing below. Learn more about the presenters by clicking on each name below.
Overview of LCH in Children
Dr. Maarten Egeler, MD, PhD
Toronto, ON Canada
Professor Maarten Egeler is an internationally recognized expert in the treatment and research of stem cell transplantation, histiocytoses, and bone tumours. After graduation in 1985 from the University of Leiden, and his residency in paediatrics in Amsterdam, the Netherlands, he was awarded a research fellowship from the Royal Dutch Academy of Arts and Sciences at the University of Minnesota, where he worked on his PhD thesis titled: Langerhans cell histiocytoses and other histiocytic disorders, successfully defended in 1993.
Subsequently he joined the Division of Pediatric Hematology and Oncology at the Erasmus University of Rotterdam, and after five years he was appointed Associate Professor of Oncology and Pediatrics at the Southern Alberta Children's Cancer Program of the University of Calgary, Canada. In 2000, he became the Director of the Division of Pediatric Immunology, Hematology, Oncology, Bone Marrow Transplantation and Auto-immune disease at the Leiden University Medical Center. In 2011, he moved back to Canada and accepted the position of Section Head, Stem Cell Transplantation within the Division of Hematology and Oncology at The Hospital for Sick Children (SickKids) in Toronto. He is a holder of the Garron Family Chair in Childhood Cancer Research and a professor at the University of Toronto.
Dr. Egeler has served for a decade as Board Member of the Pediatric Diseases Working Party of the European Group for Blood and Marrow Transplantation (EBMT). He has been President of the International Society of Pediatric Oncology (SIOP), the President of the international Histiocyte Society (Board-member for 12 years), and President of the Dutch Childhood Oncology Group (DCOG) (active Board-member for 10 years). Currently he is active within the Oncology Disorders Strategy Group and the Cellular Therapeutic Strategy Group of the Pediatric Blood and Marrow Transplant Consortium (PBMTC).
His research has been dedicated to Stem Cell Transplantation with a main focus on Graft-versus-Host Disease opposed to Graft-versus Leukemia and mesenchymal stem cells. He considers Stem Cell Transplantation the platform for cell therapy and innovation. Furthermore, he has great interest and expertise in the immunologic aspects of dendritic cells in relation to Langerhans cell histiocytoses.
Dr. Egeler has authored and co-authored more than 225 manuscripts and chapters in national and international journals, with highlights in Blood, Journal of Experimental Medicine, Nature Reviews and Nature Medicine. He is still mentoring ten PhD students at the University of Leiden, but will develop something similar at SickKids.
Dr. Egeler discusses an overview of Langerhans cell histiocytosis (LCH), its symptoms, diagnosis and treatment, as well as a description of the BRAF mutation and the importance of the relationship between the Histiocytosis Association and the Histiocyte Society.
LCH Degrees of Risk
Kimo Stine, MD
Little Rock, AR USA
Dr. Stine discusses the difference between the degrees of risk with LCH (low, high, and multi-system involvement). Dr. Stine also outlines what determines the length of treatment for LCH.
Dr. Stine discusses the difference between the degrees of risk with LCH (low, high, and multi-system involvement). Dr. Stine also outlines what determines the length of treatment for LCH.
CNS Involvement
Dr. Kenneth McClain, MD, PhD
Houston, TX USA
Kenneth McClain, MD, PhD is a Professor of Pediatrics at Baylor College of Medicine. He graduated from the University of Chicago School of Medicine in 1973 as a trainee in the Pediatric Medical Scientist program. From 1973-76 he did a pediatric residency at the Johns Hopkins Hospital in Baltimore followed by post-doctoral research at the National Institutes of Health in the Laboratory of Molecular Genetics of the Child Health Institute from 1976-1979. He completed his pediatric oncology fellowship at the University of Minnesota School of Medicine (1979-81) and was then on the faculty for 5 years. Since 1986 he has been an attending physician in the Texas Children’s Cancer and Hematology Center and a Professor of Pediatrics since 2003. Dr. McClain is a member of the Histiocytic Diseases/Lymphoma clinic team. In 2001 he developed a Histiocytosis Center which now sees over 135 new patients a year including children and adults with Langerhans cell histiocytosis, hemophagocytic lymphohistiocytosis, juvenile xanthogranuloma, Rosai Dorfman Disease, Multifocal Reticulohistiocytosis, and Erdheim Chester Disease. He and Dr. Carl Allen have done ground-breaking work on the biology of Langerhans cell histiocytosis, clinical prognostic factors in hemophagocytic lymphohistiocytosis and improved treatments for adult patients with histiocytic diseases.
Dr. McClain outlines what it means to have Central Nervous System involvement (CNS) as well as the symptoms and treatment. Dr. McClain also covers the relationship between LCH and CNS, long-term effects and what patients can expect with this diagnosis.
Late Effects of LCH
Dr. K. Scott Baker, MD
Fred Hutchinson Cancer
Research Center
Seattle, WA USA
Dr. Baker is a Member in the Clinical Research and Public Health Sciences Divisions at the Fred Hutchinson Cancer Research Center and Professor in the Department of Pediatrics at the University of Washington in Seattle Washington. He holds the Gloria and Gerald Swanson Endowed Chair for Pediatric Blood and Marrow Transplant Research and is the Director of the Pediatric Blood and Marrow Transplantation and Cancer Survivorship Programs. He is a nationally recognized expert in the field of hematopoietic stem cell transplantation and in cancer survivorship and late effects.
He received his M.D. degree at the University of Nebraska College of Medicine in 1988, completed his internship and residency in Pediatrics at the University of Nebraska Medical Center in 1991 and subsequently did his post-doctoral fellowship in Hematology-Oncology at The Children's Hospital Medical Center, Cincinnati OH, 1991-1994. Dr, Baker then returned to the University of Nebraska as faculty in Pediatric Hematology-Oncology and Bone Marrow Transplant where he remained until joining the faculty at the University of Minnesota in 1997. In 2009 he joined the Fred Hutchinson Cancer Research Center and the University of Washington in Seattle Washington. He is board certified in Pediatrics Hematology/Oncology.
Dr. Baker's research interests are in the acute and long term-effects of hematopoietic cell transplantation and are focused on the use of epidemiologic methods to study treatment related acute and long-term complications in survivors after hematopoietic stem cell transplant. This research forms the basis for his current grant support in which the incidence, risk factors, and characteristics of cardiac, pulmonary, renal, endocrine, reproductive late effects and quality of life outcomes in survivors are being studied. Additional studies are examining the “metabolic syndrome” and the early development of cardiovascular risk factors and diabetes in transplant survivors. Dr. Baker also serves as the principal investigator for several hematopoietic stem cell transplant clinical trials, particularly for treatment of children with hemophagoytic lymphohistiocytosis (HLH), Langerhan’s Cell Histiocytosis (LCH) and other primary immune deficiencies. For these patients, a novel type of transplantation that is designed to make transplantation for patients with these disorders safer by utilizing a reduced intensity transplant preparative regimen is being investigated. He has authored over 125 research papers and book chapters, and is a member of numerous professional societies including the Histiocyte Society since 1995 where he has been involved with both the LCH and HLH committees and served on the scientific Review Committee from 2005-2011.
Dr. Baker discusses the late effects/long term side effects of LCH and its treatment as well as any learning or behavioral issues that may arise.
Overview of LCH (en Español)
Dr. Carlos Rodriguez-Galindo, MD
St. Jude Children's Research Hospital
Memphis, TN USA
Dr. Carlos Rodríguez-Galindo, a Spanish native, graduated from Autonomous University of Barcelona, Spain. Dr. Rodriguez-Galindo did his training in Pediatrics at the "Vall d’Hebron’s Children’s Hospital", in Barcelona, and completed his training in Pediatric Hematology-Oncology at St. Jude Children’s Research Hospital. After 10 years as clinical researcher at St. Jude Children’s Research Hospital, in August 2009 he moved to Dana-Farber Cancer Institute and Children’s Hospital in Boston, where he was the Director of the Pediatric Solid Tumor Program, Medical Director of the Clinical and Translational Investigations Program, and Director of the Global Health Initiative in Pediatric Cancer and Blood Disorders. He was Associate Professor of Pediatrics at the Harvard Medical School.
Dr. Rodriguez-Galindo’s clinical research has been focused in retinoblastoma, bone sarcomas, histiocytic disorders and rare childhood cancers. He actively participates in the development of new therapeutic strategies in those areas, and also has a special interest in the study and development of new drugs. Dr. Rodriguez-Galindo has been the primary investigator of several studies at St. Jude, including the frontline retinoblastoma trial, and several phase I studies. Dr. Rodriguez-Galindo is the Chair of the Retinoblastoma and Rare Tumors Committee at the Children’s Oncology Group (COG) and the primary investigator of COG studies for nasopharyngeal carcinoma, adrenocortical carcinoma, and recurrent malignant germ cell tumors. He was also the President of the Histiocyte Society and co-PI of the frontline LCH-IV study. Dr. Rodriguez-Galindo is also actively involved in the development of pediatric oncology programs in developing countries, particularly Latin-America, Africa, and South East Asia.
Currently, Dr. Rodriguez-Galindo is and Executive Vice President at St. Jude Children's Research Hospital. He also is a member of St. Jude Faculty, Chair of the Department of Global Pediatric Medicine, Director of St. Jude Global, and Co-Associate Director of Outreach of the Comprehensive Cancer Center.
¿Qué es la Histiocitosis de Célula de Langerhans (HCL) (en niños)?
¿Cuáles son los síntomas de la HCL?
¿Existe una curacón para la HCL?
Overview of LCH in Adults
Dr. Michael Girschikofsky, MD
Linz, Austria
Michael Girschikofsky, MD, is the Deputy Head of the Division Medicine I (Hematology and Stem Cell Transplantation, Hemostasis and Medical Oncology) and Deputy Medical Director at the Elisabethinen Hospital Linz, Austria.
Dr. Girschikofsky graduated from the Leopold-Franzens University at Innsbruck, Austria in 1990 and completed his internal medicine residency and hematology and oncology fellowship at Elisabethinen Hospital Linz in 2000.
Dr. Girschikofsky`s research interests focus on the biology and treatment of adult acute leukemias, prevention and therapy of fungal infections, and the biology and clinical management of Langerhans cell histiocytosis and other histiocytic disorders. He is a member of the scientific board of the Austrian Society of Hematology and Medical Oncology and member of the AGMT-study group board.
For many years Dr. Girschikofsky has worked on the Austrian Langerhans Cell Histiocytosis Registry and consults worldwide physicians of patients with histiocytic disorders. He is a member of the scientific board of the German Patient Association HistiozytoseHilfe e.V., a Project Partner of Euro Histio Net, and since 2012 member of the LCH Steering Committee and chair of the Adult Histiocytosis Study Group of the Histiocyte Society. In 2013 he published in cooperation with other recognized experts the first available recommendations for the management of adult patients with Langerhans Cell Histiocytosis.
Dr. Girschikofsky discusses an overview of LCH in Adults, current treatments, and what patients can expect moving forward after diagnosis.
Overview of Pulmonary LCH
Dr. Robert Vassallo, MD
Rochester, MN USA
Dr. Vassallo obtained his medical degree from the University of Malta. Following completion of medical school training, he moved to the United States in 1995 to pursue residency training in internal medicine and subsequently pulmonary and critical care sub-specialty training at the Mayo Clinic in Rochester, MN. After additional training in Immunology as a Mayo Scholar, he joined the staff at the Mayo Clinic and currently practices as a pulmonary specialist with efforts committed to clinical outpatient consultative care, inpatient pulmonary hospital care, and research. His research is focused on understanding mechanisms by which cigarette smoking impairs host immunity and promotes lung diseases like chronic obstructive pulmonary disease and asthma. Another major focus of his research is with certain interstitial lung diseases that cigarette smokers are prone to develop, including pulmonary Langerhans cell Histiocytosis and rheumatoid arthritis associated diffuse lung disease.
Dr. Vassallo gives an overview of Pulmonary Langerhans cell histiocytosis (PLCH) as well as the symptoms, diagnosis, treatment and long-term effects.
Overview of HLH
Dr. Michael Jordan, MD
Cincinnati, OH USA
Dr. Michael Jordan graduated from the University of Texas Southwestern Medical School in 1993. After completing a pediatrics residency at the Children’s Hospital of Dallas in 1996, he began a Pediatric Hematology/Oncology fellowship at The Children’s Hospital, Denver, Colorado. After completing clinical training, Dr Jordan joined the laboratory of Drs. Philippa Marrack and John Kappler in 1997, where he studied basic T cell biology. In 2002, Dr Jordan became an Instructor of Pediatrics and in 2003 was named Assistant Professor at the University of Colorado Medical School. In 2004 he moved to Cincinnati Children’s Hospital/ University of Cincinnati, where he is currently an Associate Professor of Pediatrics in the divisions of Cellular and Molecular Immunology, and Bone Marrow Transplantation and Immunodeficiency. Dr. Jordan’s research interests include defining the pathophysiology of hemophagocytic lymphohistiocytosis and discovery/ translation of improved therapies for this disorder.
Dr. Jordan gives an overview of hemophagocytic lymphohistiocytosis (HLH), its symptoms, diagnosis and treatment.
Overview of Rosai-Dorfman Disease
Dr. Oussama Abla, MD
Toronto, ON Canada
Dr Oussama Abla, a Lebanese native, graduated from the University of Genoa, Italy in 1989 and completed his training in Pediatrics at the Gaslini Children’s Hospital of Genoa in 1994. During those years, his research was mainly focused on stem cell transplantation in pediatric solid tumors and acute myeloid leukemia. He completed his fellowship in Pediatric Hematology/Oncology at the Hospital for Sick Children, Toronto in 1997. He joined the division of Pediatric Hematology/Oncology at the Hospital for Sick Children in year 2000 as an Assistant Professor. In 2010, he was appointed Associate Professor of Pediatrics at the University of Toronto. Dr Abla’s research is focused on rare diseases in children. His research has been dedicated to rare pediatric non-Hodgkin’s lymphomas especially Primary CNS lymphomas, acute promyelocytic leukemia (APL), supportive care and pediatric Histiocytic disorders. He authored and co-authored 58 manuscripts and chapters in international scientific journals, and was the Editor of a book on “Supportive Care in Pediatric Oncology” in 2009. Since 2007, he has served as a member of the Histiocyte Society Working Group for the LCH-IV trial and currently acts as the Canadian Coordinator for this trial, and was chair of the Rare Histiocytic Disorders Working group since 2009. Dr Abla is also a member of the Histiocyte Society Education Committee, the International Primary CNS Lymphoma group, the American Society of Pediatric Hematology Oncology (ASPHO) Program Committee, the Children’s Oncology Group (COG) - APL Subcommittee as well as the International-BFM Study Group- NHL and AML Committees.
In 2013, he was elected chair of the Histiocyte Society Rare Histiocytoses Steering Committee where his primary goal is to launch an international registry to better understand the biology and treatment of the rare histiocytoses.
Dr. Abla gives an overview of Rosai-Dorfman disease, its symptoms, diagnosis and treatment.
Overview of Juvenile Xanthogranuloma
Dr. Oussama Abla, MD
Toronto, ON Canada
Dr Oussama Abla, a Lebanese native, graduated from the University of Genoa, Italy in 1989 and completed his training in Pediatrics at the Gaslini Children’s Hospital of Genoa in 1994. During those years, his research was mainly focused on stem cell transplantation in pediatric solid tumors and acute myeloid leukemia. He completed his fellowship in Pediatric Hematology/Oncology at the Hospital for Sick Children, Toronto in 1997. He joined the division of Pediatric Hematology/Oncology at the Hospital for Sick Children in year 2000 as an Assistant Professor. In 2010, he was appointed Associate Professor of Pediatrics at the University of Toronto. Dr Abla’s research is focused on rare diseases in children. His research has been dedicated to rare pediatric non-Hodgkin’s lymphomas especially Primary CNS lymphomas, acute promyelocytic leukemia (APL), supportive care and pediatric Histiocytic disorders. He authored and co-authored 58 manuscripts and chapters in international scientific journals, and was the Editor of a book on “Supportive Care in Pediatric Oncology” in 2009. Since 2007, he has served as a member of the Histiocyte Society Working Group for the LCH-IV trial and currently acts as the Canadian Coordinator for this trial, and was chair of the Rare Histiocytic Disorders Working group since 2009. Dr Abla is also a member of the Histiocyte Society Education Committee, the International Primary CNS Lymphoma group, the American Society of Pediatric Hematology Oncology (ASPHO) Program Committee, the Children’s Oncology Group (COG) - APL Subcommittee as well as the International-BFM Study Group- NHL and AML Committees.
In 2013, he was elected chair of the Histiocyte Society Rare Histiocytoses Steering Committee where his primary goal is to launch an international registry to better understand the biology and treatment of the rare histiocytoses.
Dr. Abla gives an overview of Juvenile Xanthogranuloma, its symptoms, diagnosis and treatment.
Overview of Erdheim-Chester Disease (ECD)
Dr. Robert Arceci, MD, PhD
Phoenix, AZ USA
Dr. Arceci completed his undergraduate studies at Trinity College, received his Ph.D. and M.D. from the University of Rochester, and then completed his Residency in Pediatrics and Fellowship in Pediatric Hematology/Oncology at The Children’s Hospital, Boston and Harvard Medical School. Following faculty appointments at Harvard Medical School, the Dana Farber Cancer Institute and Boston Children’s Hospital, he became Director of Pediatric Hematology/Oncology at Children’s Hospital Medical Center in Cincinnati. In 2000, Dr. Arceci became Director and King Fahd Professor of Pediatric Oncology and Professor of Oncology and Pediatrics at the Johns Hopkins University School of Medicine. He served as Director, Children’s Center for Cancer and Blood Disorders Hematology/Oncology at Phoenix Children’s Hospital and the University of Arizona College of Medicine, Phoenix as well as Co-Director of the Ron Matricaria Institute of Molecular Medicine until his unexpected passing in June 2015.
Dr. Arceci was a member of numerous scientific and medical societies, advisory committees and review boards, and had been the recipient of several prestigious honors and awards. He was the author of a large number of published scholarly works and served as a reviewer for several distinguished journals. He was considered an international authority in many challenging areas of clinical pediatric oncology including the diagnosis and treatment of Leukemia and Langerhans Cell Histiocytosis. He had served on a variety of committees in the Pediatric Oncology Group, the Children’s Cancer Group and the Children’s Oncology Group, including Chairperson for the Myeloid Leukemia Committee and Vice-Chair of the Biology and Therapeutics Translational Committee. Dr. Arceci was Editor-in-Chief of Pediatric Blood and Cancer and had previously served as Editor-in-Chief of the Journal of Pediatric Hematology/Oncology and Associate Editor of the Journal of Pediatrics. He was the editor of several textbooks, the most recent, Pediatric Hematology, along with co-editors, Ian Hann and Owen Smith, Targeted Therapy in Pediatric Cancer with co-editor, Peter Houghton, and served as editor of the oncology section of the most recent Rudolf’s Pediatrics. He was a co-editor of a textbook in preparation titled, Cancer Genomics. He had been a Leukemia/Lymphoma Society translational researcher. He continued to be actively involved in defining optimal health care models as well as educational initiatives and had received several teaching awards and given the While Coat Lecture at the 2009 Johns Hopkins ceremony. He was the originator of the internationally acclaimed movie on childhood cancer, A Lion in the House, filmed by documentary filmmakers Steven Bognar and Julia Reichert.
A physician/scientist who had concentrated his work on basic and translational research in pediatric hematology and oncology, Dr. Arceci's focus continued on discovery and implementation of basic science to improve the comprehensive care for children and adolescents with cancer. He had been particularly involved in the development of novel therapeutic targets and immunotherapies to improve outcomes while reducing adverse side effects in children and adults with leukemia and histiocytic disorders. A large part of his focus was to bring together teams of multidisciplinary groups of investigators to develop scientifically robust and interactive environments for molecularly based, individualized treatment.
Dr. Arceci gives an overview of ECD, its symptoms, diagnosis and treatment.
Overview of Diabetes Insipidus (DI)
Dr. Whitlock gives an overview of Diabetes Insipidus, its diagnosis and treatment.
Importance of Clinical Trials
Dr. Thomas Gross, MD, PhD
Rockville, MD USA
Thomas G. Gross, MD, PhD, is the Deputy Director of Science for the Center for Global Health at the National Cancer Institute in Rockville, MD.
Dr. Gross graduated with a BS degree with honors in Biochemistry from the University of Nebraska. He earned a combined MD-PhD degree, from the University of Nebraska Medical Center (UNMC). After completing a Pediatric residency at the UNMC, he received fellowship training in Pediatric Hematology/Oncology at the University of Minnesota. He then went back to become a faculty member in the Departments of Pediatrics and Pathology at UNMC from 1993-1998. He subsequently, became the Director of the Blood and Marrow Transplant (BMT) program at Cincinnati Children’s Hospital Medical Center from 1998-2002. From 2002 until the summer of 2013, he was the Division Chief and Gordon Teter Chair for Cancer Research at Nationwide Children’s Hospital in Columbus Ohio.
Dr. Gross’s honors include membership in the Alpha Omega Alpha Medical Honor Society; several endowed visiting professorships, an NIH Merit Award and America’s Top Doctors and The Best Doctors in America.
Dr. Gross has authored over 100 peer-reviewed manuscripts and textbook chapters. His areas of research interests include lymphomas and cancers associated with immune deficiency. He has chaired several national/international clinical trials funded by the NIH. He has served as a leader in Children’s Oncology Group including Chair of the Non-Hodgkin Lymphoma Disease Committee, the Scientific Chairs Committee, and the Data Safety Monitoring Board (DSMB), as well as serving on the Scientific Council and the Executive Committee. Dr. Gross has chaired or served on numerous DSMBs, including the current Chair of the Histiocyte Society DSMB. He has also served on numerous advisory committees for pharmaceutical companies and the FDA, for the development of new agents in the treatment of cancer. In his new position in the Center for Global Health at the US NCI, he is responsible for facilitating international research and clinical trials for cancer and other rare disease, such as the histiocytic diseases.
Dr. Gross’s involvement in the histiocytosis began with his research and care for patients with HLH caused by Epstein-Barr virus. He values the camaraderie and intellectual exchange of the Histiocyte Society and understands the necessity and is committed to international collaboration for the advancement in the treatment of rare diseases like histiocytosis.
Dr. Gross reviews the importance of clinical trials for patients as well as for the future of histiocytic research, the challenges associated with trials and how you or your physician can learn more about ongoing clinical trials.
Scientific Research Review Process
Dr. Carl Allen, MD, PhD
Dr. Carl Allen is a member of the Leukemia and Lymphoma Teams. His primary research is focused on the clinical and biologic aspects of Langerhans cell histiocytosis (LCH). Along with Dr. Kenneth McClain, Dr. Carl Allen has developed the largest Histiocytosis Center in the world with over 100 new diagnoses annually, allowing the Center to create a large bank of LCH tissues and plasma. Dr. Carl Allen has developed gene expression and proteomic strategies to analyze the identity and function of the cells that cause LCH. The ultimate goal of these experiments is to identify genes, proteins, and pathways that may be used to diagnose and cure patients with LCH. These experiments may also provide insight into dendritic cell biology and tumor immunology.
Texas Children's Cancer Center
Baylor College of Medicine
Houston, TX USA
Dr. Carl Allen is Principal Investigator of the Histiocytosis Lab and Co-Director of the Lymphoma Program at the Texas Children’s Hospital Cancer Center, as well as Chair of the Histiocyte Society Scientific Committee. His primary research is focused on the clinical and biologic aspects of Histiocytic Disorders including Langerhans Cell Histiocytosis (LCH), Juvenile Xanthogranuloma (JXG), Rosai-Dorfman Disease, Erdheim-Chester Disease, and Hemophagocytic Lymphohistiocytosis. Along with Dr. Kenneth McClain, Dr. Carl Allen has developed a dedicated Histiocytosis Program that sees over 150 new patients with Histiocytic Disorders annually, and all of their patients are invited to participate in research studies. Dr. Allen has developed gene expression and proteomic strategies to analyze the identity and function of the cells that cause Histiocytic Disorders. The ultimate goal of these experiments is to identify genes, proteins, and pathways that may be used to diagnose and cure patients. These experiments may also provide insight into dendritic cell biology and tumor immunology.
Dr. Allen discusses the role of the Histiocyte Society Scientific Committee in the Histiocytosis Association's competitive grant application process. Dr. Allen also discusses the grading criteria and the importance of this type of funding process.
Regional Meetings
The rarity of histiocytic disorders makes it difficult for patients and families to have the opportunity to meet and share with others who understand what they are going through. It is common for patients and families to feel alone and hopeless as they face the devastating effects of histiocytic disorders. Regional Meetings offer the opportunity to learn the latest information about histiocytic disorders through a presentation from experts and to connect with other patients and families in your region. The informal atmosphere invites the sharing of personal experiences and the offering of emotional comfort and moral support.
Our in-person regional meetings are temporarily postponed until further notice to protect the safety of all involved. We look forward to gathering together in-person again in the future! In the meantime, we have periodic virtual webinar opportunities to attend live and view on-demand in our Webinars section above.
Benefits of Participating:
- Feel less lonely, isolated or judged
- Gain a sense of empowerment
- Improve your coping skills
- Talk openly and honestly about feelings
- Reduce distress, depression or anxiety
- Develop a clearer understanding of what to expect with your situation
- Get practical information about treatment options
- Learn about better patient care
- Improve caregiver wellness
Histio News Reader
Some of the articles presented on this website are accessed through RSS feeds from third-party sources that are not necessarily part of the Histiocytosis Association. While we try to select appropriate feeds to prevent objectionable content from being displayed, the presence of any article does not indicate endorsement or recommendation by the Histiocytosis Association.
If you know of a histio-related article that isn't shown here, please send the article to outreach@histio.org.
- U.S. Food and Drug Administration Accepts for Priority Review Bristol Myers Squibb's Application for LAG-3-Blocking Antibody Relatlimab and Nivolumab Fixed-Dose Combination as Treatment for Patients with Unresectable or Metastatic Melanoma - Business Wire September 20, 2021
- Volunteers kick off 41st annual Terry Fox Run - BarrieToday September 19, 2021
- Merck's KEYTRUDA® (pembrolizumab) Plus Chemotherapy Reduced Risk of Death by 27% Versus Chemotherapy as First-Line Treatment for Patients With Metastatic Triple-Negative Breast Cancer Whose Tumors Expressed PD-L1 (CPS ≥10) - Business Wire September 19, 2021
- IMFINZI Plus Chemotherapy Tripled Patient Survival at Three Years in the CASPIAN Phase III Trial in Extensive-Stage Small Cell Lung Cancer - Business Wire September 18, 2021
- Merck's KEYTRUDA® (pembrolizumab) Plus Chemotherapy With or Without Bevacizumab Reduced Risk of Death by One-Third Versus Chemotherapy With or Without Bevacizumab as First-Line Treatment for Persistent, Recurrent or Metastatic Cervical - Business Wire September 18, 2021
- ALK Inhibitors Help to Define Precision Medicine - Targeted Oncology September 17, 2021
- IMFINZI Combined With Novel Immunotherapies Improved Clinical Outcomes for Patients With Unresectable, Stage III Non-Small Cell Lung Cancer - Business Wire September 17, 2021
- Bristol Myers Squibb Receives Positive CHMP Opinion for Opdivo (nivolumab) + Chemotherapy for Patients with HER2-Negative Advanced or Metastatic Gastric, Gastroesophageal Junction or Esophageal Adenoc - StreetInsider.com September 17, 2021
- Five-Year Data from CheckMate -214 Show Opdivo (nivolumab) Plus Yervoy (ipilimumab) Demonstrates Longest Median Overall Survival Currently Reported in Phase 3 Trial of Patients with Previously Untreated Advanced or Metastatic Renal Cell Carcinoma - Business Wire September 16, 2021
- Bears claw for a cause | News, Sports, Jobs - SalemNews.net September 16, 2021
- Imaging Features and Prognostic Value of FDG PET/CT | CMAR - Dove Medical Press September 20, 2021
- IMFINZI Plus Chemotherapy Tripled Patient Survival at Three Years in the CASPIAN Phase III Trial in Extensive-Stage Small Cell Lung Cancer - Business Wire September 18, 2021
- Crispr: Bad News For Gene Editing - Seeking Alpha September 18, 2021
- IMFINZI Combined With Novel Immunotherapies Improved Clinical Outcomes for Patients With Unresectable, Stage III Non-Small Cell Lung Cancer - Business Wire September 17, 2021
- Does Anakinra Have a Role in the Treatment of Severe COVID-19? - Rheumatology Advisor September 13, 2021
- IMFINZI and tremelimumab with chemotherapy improved progression-free survival by 28% and overall survival by 23% in 1st-line Stage IV non-small cell lung cancer vs. chemotherapy - Business Wire September 9, 2021
- Merck To Present New Data From Its Broad Oncology Portfolio and Pipeline at ESMO 2021, Including in Earlier Stages of Cancer - Business Wire September 8, 2021
- Prognostic factors in anti-MDA5 antibody-positive patients | IJGM - Dove Medical Press August 24, 2021
- Characteristics of adult hemophagocytic lymphohistiocytosis | IJGM - Dove Medical Press August 20, 2021
- Balancing the CAR T: Perspectives on Efficacy and Safety of CAR T-Cell Therapy in Hematologic Malignancies - AJMC.com Managed Markets Network August 18, 2021
- Christian Meissenn, Convicted Penny Stock Manipulator, Dies In Car Crash - Yahoo Finance August 25, 2021
- Connecticut man convicted in $19M stock fraud scheme dies in car crash - New York Post August 25, 2021
- Convicted stock manipulator who stole $20 million from 12,000 investors dies in I-95 crash - Hartford Courant August 24, 2021
- Erdheim Chester Disease Treatment Market Forecast to 2026: Top Companies, Trends, Growth Factors and Forecast to 2026 - Market Primes August 22, 2021
- What is bradycardia and how to treat it - Emergency-Live August 20, 2021
- Renal involvement in retroperitoneal fibrosis | IJNRD - Dove Medical Press July 29, 2021
- Diagnostic approaches for large vessel vasculitides. | OARRR - Dove Medical Press June 1, 2021
- Israel / Gaza, ICRC: Civilians are paying a heavy price in the escalation - Emergency-Live May 16, 2021
- Pamela D. Shirley - Villages-News May 14, 2021
- In Memoriam: Remembering Children’s Great Event Show Head Allen Blum & More Shoe Industry Leaders - Yahoo Lifestyle May 1, 2021
- ALK Inhibitors Help to Define Precision Medicine - Targeted Oncology September 17, 2021
- Tumour-busting implant inserted in baby's eye to save his sight - SowetanLIVE August 7, 2021
- Procedure to save baby’s sight a medical first - News24 August 3, 2021
- MY STORY | My baby could have lost his eye if I didn’t push for answers - News24 July 30, 2021
- Medical first for South Africa as baby boy undergoes sight-saving surgery - News24 July 28, 2021
- Brave baby AJ undergoes sight-saving operation at age of just nine months - Independent Online July 26, 2021
- Medical first for SA after cancer treatment used to help save the sight of baby AJ - IOL July 26, 2021
- Childhood dystonic reactions in the middle Black Sea region : Medicine - LWW Journals July 2, 2021
- Picture of Erythema Ab Igne Prev Next - WebMD June 14, 2021
- Lilly Presents New Data on Retevmo® (selpercatinib) in Advanced RET Fusion-Positive Gastrointestinal and Other Cancers at 2021 American Association for Cancer Research (AACR) Annual Meeting - PRNewswire April 11, 2021
- WNCC softball holding Cooper's Crusade Cougars Unlimited benefit - Scottsbluff Star Herald September 10, 2021
- WNCC softball team effort supports coach's nephew battling rare - NEWS CHANNEL NEBRASKA - News Channel Nebraska September 8, 2021
- Competitive Drive: Local powerlifter shines at nationals, draws inspiration from 2-year-old son - KSN-TV August 27, 2021
- Histiocytic and Dendritic Cell Sarcomas of Hematopoietic Origin Share Targetable Genomic Alterations Distinct from Follicular Dendritic Cell Sarcoma - The Oncologist April 27, 2021
- Nodular Lesion in a Newborn with Spontaneous Regression - AAP News March 1, 2021
- New NCCN Guidelines for Histiocytosis Clarify Best Practices for Recently-Defined Cancers - Newswise March 1, 2021
- Young Girl Diagnosed and Treated With the Rare Case of the Rosai Dorfman Disease - Business Wire India August 20, 2020
- Juvenile Xanthogranuloma: Case Report and Literature Review | IMCRJ - Dove Medical Press February 25, 2020
- Vikram Hospital Bengaluru performs successful delivery on patient suffering from rare case of Intracranial Rosai Dorfman Disease - Express Healthcare January 29, 2020
- Largest Study of Its Kind Reveals New Targetable Genetic Causes of the Rare Blood Disorder Histiocytosis - On Cancer - Memorial Sloan Kettering December 4, 2019
- Nephrogenic Diabetes Insipidus Market Overview, Trends And Growth Opportunities Forecasted Till 2028 – Stillwater Current - Stillwater Current September 20, 2021
- Ribbleton mum died of head injury from accidental fall down stairs at home - Lancashire Post September 17, 2021
- Diabetes Diagnostics Market: Blood Glucose Monitoring Devices Segment to Dominate Global Market - BioSpace September 17, 2021
- Vinblastine monotherapy induction prior to radiotherapy for patients with intracranial germinoma during the COVID‐19 pandemic - Wiley September 14, 2021
- A recipe for hope: How mRNA vaccines work - Carlsbad Current Argus September 1, 2021
- A recipe for hope: Vaccines and the delta variant - Carlsbad Current Argus August 31, 2021
- A 54-year-old woman with chronic lithium toxicity - CMAJ August 30, 2021
- 10 Medications That May Cause Increased Urination - Everyday Health August 25, 2021
- What to Expect During Transsphenoidal and Gamma Knife Procedures - Cushing's Disease News August 19, 2021
- Clinical Challenge: An Underdiagnosed Cause of Resistant Hypertension - Clinical Advisor August 18, 2021
- The Myositis Association Launches Newest National Signature Event FUN FIT FLEX in Four Markets and Virtually This Fall - PRNewswire September 20, 2021
- Amolyt Raises $80M to Develop AZP-3601 for Hypoparathyroidism - Hypoparathyroidism News September 20, 2021
- Newborn health screenings mean early detection, improved quality of life for WA babies - Tri-City Herald September 20, 2021
- Scarsdale Volunteer Fire Fighters Contribute To Medical Research To Help Child with Rare Disease - Scarsdale10583.com September 20, 2021
- Rare Disease Genetic Testing market share to record robust growth through 2026 - Northwest Diamond Notes September 20, 2021
- A Day in the Life of a Genetic Counselor in the Yale Genetics Department - Yale School of Medicine September 20, 2021
- Alleged Abuse At Private School (San Diego News Now) - KPBS September 20, 2021
- Genomenon to accelerate genetic diagnosis for rare disease - SelectScience September 20, 2021
- AstraZeneca's Alexion taps DNA profiler Genomenon for rare disease diagnoses - FierceBiotech September 20, 2021
- Mirati switches up leadership as KRAS drug speeds toward FDA filing - FierceBiotech September 20, 2021