Rare Disease Resource Guide For Caregivers
2021 rare disease resource guide for caregivers published by Global Genes. It’s brimming with advice and resources for caregivers of patients with rare diseases.
The Memorial Sloan Kettering Make-an-IMPACT Initiative is a rare-cancer global outreach initiative that provides free genomic profiling for patients with Langerhans Cell Histiocytosis (LCH), Erdheim-Chester Disease (ECD), Rosai-Dorfman Disease (RDD), Juvenile Xanthogranuloma (JXG), and Histiocytic Sarcoma (HS). Genomic profiling with world class, next-generation sequencing technology developed at Memorial Sloan Kettering…
LHF Espoir mission is to raise awareness of familial hemophagocytic lymphohistiocytosis, advance research and improve care practices and support patients and families affected by familial HLH.
ECD Global Alliance
The ECD Global Alliance (ECDGA) is dedicated to awareness, support, education, and research related to Erdheim-Chester Disease. The organization represents patients, caregivers and medical professionals from around the world.
NIH Genetic and Rare Diseases Info
Support patients and their families affected by FHL and raise awareness on this rare disease in France.
L’Association Histiocytose France
The Association Histiocytose offers moral support to patients and their families, develop information on histiocytosis, ensure a link with doctors and research and raise funds to support research.