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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 010 of the Beyond the Diagnosis, Kathy sits down with Deanna Fournier to take a look back on what the Association has accomplished this year and a look ahead at what is planned for 2022.
About this Episode: In Episode 9 of the Beyond the Diagnosis Podcast, Kathy talks with Becka Florczyk of Becka Flo Yoga about Emotional Wellness Month and some things we can do to improve and protect our own emotional and physical wellness. Whether you enjoy a current yoga practice or you’ve never stepped on the mat, this episode is sure to convince you of the emotional and physical advantages yoga has waiting for you.
About this Episode: In Episode 8, Kathy connects with Dr. Melissa Hines from St. Jude Children’s Research Hospital to discuss how clinical trials work and to understand more about the process and reasoning behind Dr. Hines’ current clinical trial project that was funded by the Association in 2019.
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.
- Amgen Announces New Data Being Presented At ASH 2021 - PRNewswire December 6, 2021
- FDA Approves Merck's KEYTRUDA® (pembrolizumab) as Adjuvant Treatment for Adult and Pediatric (≥12 Years of Age) Patients With Stage IIB or IIC Melanoma Following Complete Resection - Business Wire December 3, 2021
- Treating and managing seborrheic dermatitis - Contemporary Pediatrics December 3, 2021
- Erythematous plaques on the skin folds - The BMJ December 3, 2021
- Montville police raise funds for two families affected by cancer - theday.com December 3, 2021
- European Commission Approves KEYTRUDA® (pembrolizumab) Plus LENVIMA® (lenvatinib) as First-Line Treatment for Adult Patients With Advanced Renal Cell Carcinoma - Business Wire November 29, 2021
- Wicklow mum gave birth to Ireland's smallest surviving baby - who is now a healthy toddler - RSVP Live November 17, 2021
- Challenges in Diagnosing and Treating Histiocytic Neoplasms - Targeted Oncology November 12, 2021
- Carcinogenicity of 1,1,1-trichloroethane and four other industrial chemicals - The Lancet November 11, 2021
- Lunaphore highlights novel spatial biology research at SITC 2021 - KULR-TV November 9, 2021
- Amgen Announces New Data Being Presented At ASH 2021 - PRNewswire December 6, 2021
- Hemophagocytosis, hyper-inflammatory responses, and multiple organ damages in COVID-19-associated hyperferritinemia - DocWire News December 5, 2021
- Cytopenias and survival outcomes after CD19 CAR-T therapy | CMAR - Dove Medical Press November 29, 2021
- European Commission Approves KEYTRUDA® (pembrolizumab) Plus LENVIMA® (lenvatinib) as First-Line Treatment for Adult Patients With Advanced Renal Cell Carcinoma - Business Wire November 29, 2021
- Survival analysis of Hepatosplenic T cell lymphoma | IJGM - Dove Medical Press November 17, 2021
- Hematological changes associated with COVID‐19 infection - Al‐Saadi - - Journal of Clinical Laboratory Analysis - Wiley November 16, 2021
- A randomized controlled clinical trial on efficacy and safety of anakinra in patients with severe COVID‐19 - Wiley November 11, 2021
- Case 31-2021: A 21-Year-Old Man with Sore Throat, Epistaxis, and Oropharyngeal Petechiae | NEJM - nejm.org October 14, 2021
- Does Anakinra Have a Role in the Treatment of Severe COVID-19? - Rheumatology Advisor September 13, 2021
- Performance of Cytokine Storm Syndrome Scoring Systems in Pediatric COVID‐19 and Multisystem Inflammatory Syndrome in Children - Wiley August 25, 2021
- 'Pearls and myths': Oral, cutaneous signs of rheumatic disease hold 'clue' to intervention - Healio November 9, 2021
- Kinnate Biopharma, Guardant Health Partner for Study of BRAF Mutations in Solid Tumors - Precision Oncology News November 1, 2021
- After surviving cancer, Minneapolis woman now fighting for life after pedestrian crash - FOX 9 October 28, 2021
- 18F-FDG PET/MR pediatric Langerhans cell histiocytosis | IJGM - Dove Medical Press October 1, 2021
- EMA recommends extension of indication for mepolizumab against EGPA - Emergency-Live September 18, 2021
- Neurodegenerative diseases, nanoparticles slow down Friedreich's ataxia - Emergency-Live August 29, 2021
- Convicted stock manipulator who stole $20 million from 12,000 investors dies in I-95 crash - Hartford Courant August 24, 2021
- What is bradycardia and how to treat it - Emergency-Live August 20, 2021
- Diagnostic approaches for large vessel vasculitides. | OARRR - Dove Medical Press June 1, 2021
- Pamela D. Shirley - Villages-News May 14, 2021
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- Juvenile Xanthogranuloma: Case Report and Literature Review | IMCRJ - Dove Medical Press February 25, 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
- St. Jude Pediatric and Adolescent Histiocytosis Consult Clinic - stjude.org January 27, 2019
- Imaging Features of Juvenile Xanthogranuloma of the Pediatric Head and Neck - AJNR May 1, 2016
- Cancer-Stricken Infant Who Was Kissed by Pope Is Responding to Treatment, Parents Say - ABC News November 24, 2015
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- Largest Study of Its Kind Reveals New Targetable Genetic Causes of the Rare Blood Disorder Histiocytosis - On Cancer - Memorial Sloan Kettering December 4, 2019
- Airway obstruction in Rosai-Dorfman disease - The BMJ March 21, 2019
- MEK Inhibition Spurs Durable Responses in Patients With Histiocytic Neoplasms - Cancer Therapy Advisor March 13, 2019
- St. Jude Pediatric and Adolescent Histiocytosis Consult Clinic - stjude.org January 27, 2019
- A Phase II Study of Cobimetinib in Patients with Histiocytic Disorders - On Cancer - Memorial Sloan Kettering February 6, 2016
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- World Diabetes Day to be marked today - The Nation November 14, 2021
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- Is A Fall Imminent For Endo Pharmaceuticals Stock After Its Recent 58% Rise? - Forbes November 11, 2021
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- Polydipsia: Overview and More - Verywell Health November 2, 2021
- Indian expat in UAE beats rare bacterial disease after 54-day ordeal in hospital - Gulf News December 7, 2021
- Liberating real-world data for use in clinical trials - MedCity News December 6, 2021
- CDC issues travel notice for Nigeria due to monkeypox - Outbreak News Today - Outbreak News Today December 6, 2021
- Rare Diseases Research and Resources | National Center for Advancing Translational Sciences - NCBI December 6, 2021
- Acadia Pharmaceuticals Announces Positive Top-line Results from the Pivotal Phase 3 Lavender Trial of Trofinetide in Rett Syndrome - Maryville Daily Times December 6, 2021
- Nature Medicine Publishes Results from Two Registration Studies of AYVAKIT® (avapritinib) Showing Sustained Benefits in Patients with Advanced Systemic Mastocytosis - PRNewswire December 6, 2021
- Gyroscope Therapeutics Announces Appointment of Tony Adamis to Board of Directors - Business Wire December 6, 2021
- IBM Watson Health event examines data's future role in life sciences - SiliconANGLE News December 6, 2021
- What is Scleroderma? Temple Health outlines diagnosis, treatment of rare disease - 6abc Philadelphia - WPVI-TV December 6, 2021
- Long-range four-stranded DNA structures found to play a role in rare aging disease - Science Daily December 6, 2021