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Histiocytic Disorders are a group of rare disorders in which too many immature histiocytes (a type of immune cell) build up in certain tissues and organs, including the skin, bones, spleen, liver, lungs and lymph nodes. They can damage tissue or form an abnormal mass (called a lesion or tumor). Some histiocytic disorders are considered cancer, while others are not.
ECD Global Alliance
Patients, family members, and caregivers affected by Erdheim-Chester Disease, health professionals, worldwide
Dedicated to awareness, support, education, and research related to Erdheim-Chester Disease, a rare multi-system histiocytic syndrome.
- Provides disease and clinical trial information, publications, referrals to physicians and care centers, patient registry, educational events, online supports
- Funds research exploring the diagnosis, cause, treatments, and cure of Erdheim-Chester Disease
- Advocates on behalf of Erdheim-Chester Disease patients
Histiocytosis Association
Patients and families dealing with the effects of histiocytic disorders, researchers, and healthcare professionals
Dedicated to raising awareness about histiocytic disorders, providing educational and emotional support, and funding research leading to better treatments and a cure.
- Provides disease and clinical trial information, educational videos and webinars, a peer-to-peer program, a physician finder tool, and resource directory.
- The Histiocytosis Association Research Program funds grants for laboratory research, financially supporting clinical trials, and managing and participating in the evolution of the Histiocyte Society.
- Provides some resources in Spanish and Arabic.
INTO-HLH: Hemophagocytic Lymphohistiocytosis Disease Registry
Patients, family members, and caregivers affected by Hemophagocytic Lymphohistiocytosis and health professionals
INTO-HLH (Insight into the Natural History and Treatment Outcomes of Hemophagocytic Lymphohistiocytosis) is a disease registry aimed at advancing what is known about HLH. The insights obtained from this registry will help doctors to better diagnose and manage HLH and improve treatment outcomes for future patients.
- INTO-HLH Registry is a collaboration between Cincinnati Children's Hospital Medical Center (CCHMC), Texas Children's Hospital (TCH), and Sobi North America as the industry sponsor.
- The registry is open to all forms of HLH: Primary; Secondary (Macrophage Activation Syndrome, Cytokine Release Syndrome, Malignancy-Associated HLH).
Blood Cancer United resources
Find free, specialized guidance and information for every type of blood cancer, request financial support, find emotional support, and connect with other members of the blood cancer community.
