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…
Família Histiocitose mission is to bring information and knowledge to the entire population and health sectors about histiocytosis, bringing family members, patients and doctors together in a large support community.
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.