Who We Are

About The Association

The Histiocytosis Association is the only organization of its kind, a global nonprofit organization dedicated to addressing the unique needs of patients and families dealing with the effects of histiocytic disorders, that connects patient and medical communities around the world with the resources needed along every step of the way, while leading the search for a cure.

Our Vision

To one day see a world free of histiocytic disorders.

Our Mission

We are dedicated to raising awareness about histiocytic disorders, providing educational and emotional support, and funding research leading to better treatments and a cure.

Our Values

leadership

Leadership

transparency

Transparency

charity

Charity

community

Community

excellence

Excellence

Message from our Executive Director

With 2020 behind us, we at the Histiocytosis Association are excited about our futureWe learned a lot about patience and perseverance and found out just how strong we truly are – as individuals, as a team, as a rare community, and as a world.  

I owe a huge thank you to the Association’s Board of Trustees, committed team, our partners around the world, and to each of you for making this past year one that brought out more positives than we would have imagined.  

For me, the Histiocytosis Association isn’t just about the work – it is about our community: each and every one of you. Our vision to see a world free of histiocytosis is what drives us every day.  Our conversations with you, hearing about how these rare diseases have affected you, is why we show up to give our 110% every day.  We hope that wherever you are, whatever you have faced, you know that we’re in your corner. 

As the successor to the tremendous path that the Association’s founder paved, I am truly honored and excited to be on the Association team. I have supported and admired their work since my diagnosis of Langerhans cell histiocytosis at the age of six. The Association has grown since then, as has our knowledge of histiocytic disorders. The work of the Association has helped to drive support for research grants and clinical trials that have led to profound advancements.  There are treatments approved by the FDA for Hemophagocytic Lymphohistiocytosis (HLH). A genetic mutation called BRAF can be tested for to help determine treatment protocol for Langerhans cell Histiocytosis (LCH).  Clinical Guidelines for LCH Rosai-Dorfman Disease (RDD), and Erdheim-Chester Disease (ECD) are now available through the National Comprehensive Cancer Network (NCCN). 

These are just a few of the advancements we have seen – and while this has given us all so much hope, there is more work to be done. By working together, we can and will find the answers. 

In 2021the Histiocytosis Association is prepared to continue to build upon its great legacy, working alongside our board members, stellar team, ancommunity partners.  We are committed to remaining focused on supporting our mission. This year, we hope you will join us at an eventtake part in our online education series, and stay connected with us – not only through our online platform and social media, but also know that you can always call us to connect and share experiences. We care deeply about our community – about you - and you are the reason we work tirelessly to achieve our goals. 

Deannafournier

Association Team

Deannafournier

Deanna Fournier

Executive Director
heather

Heather Fullerton

Director of Operations & Communications
KristenOrange

Kristen Nesensohn

Director of Community Relations & Fundraising
danielle

Danielle Hellick

Chief Financial Officer
kathy

Kathy Wisniewski

Histiocyte Society Secretariat
katie

Katie Moger

Fundraising & Special Events Associate
erica

Erica Dyer

Database Coordinator
jeff

Jeffrey Toughill

Executive Advisor

Board of Trustees

tracy

Tracy Brown

Chairwoman

Governance Committee Chair

Noblis, Inc.
Reston, VA

BobList Website

Robert List

Treasurer


Saudi Petroleum International, Inc.
New York, NY

kimo

Kimo Stine, MD

Secretary


University of Arkansas for
Medical Sciences
Little Rock, AR

brad

Bradley Comp

Trustee


Ayco, a Goldman Sachs Company
Los Angeles, CA

eli

Eli Diamond, MD

Trustee

Scientific Committee Chair

Memorial Sloan Kettering
Cancer Center
New York, NY

james

James Hassan, Esq

Trustee


Musick, Peeler & Garrett LLP
Los Angeles, CA

stephan

Stephan Ladisch, MD

Trustee

Medical and Scientific Advisory Committee Chair

Children's National Medical Center
Washington, DC

chad

Chad Rubin

Trustee

Strategic Planning Committee Chair

Trout Group and Trout Capital
New York, NY

christie

Christine Shipley

Trustee


Histio Warrior Parent
Simi Valley, CA

Medical and Scientific Advisory Committee

To assure that our contributions and those of our donors, both conceptual and financial, continue to have maximum impact, particularly in view of the rapidly advancing knowledge in this field, the Board of the Histiocytosis Association has established a Medical and Scientific Advisory Committee (MSAC). This committee is intended to further advance our efforts to most rapidly and effectively obtain and translate new knowledge in these diseases to benefit the outcome of children and adults (and their families) with these difficult diseases. The MSAC provides guidance to the Association at several levels--assuring that grant funding decisions are wise, particularly in the face of rapidly progressing knowledge in the field, and that the broad and strategic directions of the Association remain cutting edge. The MSAC is composed of nationally and internationally prominent investigators, ranging in interest and expertise from basic scientific to translational to clinical studies. We are looking forward to the MSAC adding important insights to future planning of the Histiocytosis Association and to providing guidance in maximizing the research contributions of the Association and our donors to the conquering of these diseases.

stephan

Stephan Ladisch, MD

Chairman

Children’s National
Medical Center
Washington, DC USA

abla

Oussama Abla, MD

The Hospital for Sick Children

(SickKids)
Toronto, ON Canada

eli

Eli Diamond, MD

Memorial Sloan Kettering Cancer Center

New York, NY USA

gross

Thomas Gross, MD

University of Colorado Anschulz Medical Campus

Aurora, CO USA

henter

Jan-Inge Henter, MD

Karolinska University Hospital

Stockholm, Sweden

merad

Meriam Merad, MD, PhD

Icahn School of Medicine

at Mt. Sinai
New York, NY USA

minkov

Milen Minkov, MD

St. Anna Children's Cancer Research Institute

Vienna, Austria

rodiguez-galindo

Carlos Rodriguez-Galindo, MD

St. Jude Children’s Research Hospital

Memphis, TN USA

rollins

Barrett Rollins, MD, PhD

Harvard Medical School

Dana-Farber Cancer Institute
Boston, MA USA

kimo

Kimo Stine, MD

University of Arkansas for Medical Sciences

Little Rock, AR USA

vassallo

Robert Vassallo, MD

Mayo Clinic

Rochester, MN USA

weitzman

Sheila Weitzman, MD

The Hospital for Sick Children

(SickKids)
Toronto, ON Canada

Histiocyte Society

histiocyte society

Committed to Research

The Histiocyte Society is a professional medical association comprised of more than 200 physicians and scientists from around the world. Members of the organization are considered to be the leaders in understanding and treating histiocytic disorders. The Society is committed to advancing knowledge about histiocytic disorders and improving outcomes for patients through the planning, development, sponsorship, and oversight of clinical research.

True Partners

For more than 35 years, the Histiocytosis Association has served as a partner, secretariat and the primary source of funding for the Histiocyte Society. The Association’s support of the Society includes:

  • Organizing and managing the Society’s annual scientific and Executive Board meetings,
  • Managing the overall organizational, administrative and financial operations,
  • Aiding in the development of organizational guidelines and operating procedures,
  • Building, developing and maintaining the organization and annual meeting websites,
  • Facilitating communication between Society members and the Executive Board, and
  • Building and managing the Society’s membership database.

Conducting these activities alleviates the Society’s leadership of the administrative duties associated with running a volunteer-based, nonprofit organization and allows them to focus solely on research and treatment.

The partnership is demonstrated again each year during the Association’s research funding cycle. The Society’s Scientific Committee conducts a comprehensive review of the applications for funding received by the Association. This is the first and a vital step in the overall review process and provides the basis for the Association’s Board of Trustees to select the very best applications for funding.

Advancing Treatment

Through extensive research and collaboration, the Histiocyte Society has made numerous, significant strides in the fight against histiocytic disorders. The Society has established scientific standards for histiocytic disorders that are accepted worldwide; they include:

  • A common language of uniform disease classification
  • Standardized diagnostic criteria
  • Guidelines for patient evaluation and follow up

The Society remains dedicated to facilitating essential and innovative clinical research – developing critical knowledge and increasingly effective treatments in the pursuit of a cure.

Building Knowledge

The Histiocyte Society hosts an annual scientific meeting in different locations around the world.  Attendance is open to members of the Society as well as other professionals working in the field of histiocytic disorders and related studies. Presentations include the results of completed research studies, as well as proposals for new studies.  This interactive forum allows the best and brightest minds in the histiocytosis community to share the most progressive information and to shape the future of research.  Beyond the prolific exchanges that occur during the meeting, presenters work collectively to extend their reach by publishing subsequent articles and manuscripts in scientific journals worldwide.

In 2020 due to the COVID-19 pandemic, the Histiocyte Society was unable to meet in person for their regularly scheduled annual meeting. However, in order to maintain momentum and continue providing quality updates and education, the Executive Board quickly pivoted to hosting online webinars for doctors, researchers and scientists. These webinars have proven to be greatly beneficial to continuing the work of advancing histiocytosis research.

Annual Meeting Programs

Click on the link below to view that year's annual meeting program (you must be logged in to access each program).