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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.
Make-an-IMPACT
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…
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.
Artemis Society for Histiocytosis – Greece
The Artemis Association supports patients and their families, fosters research on the causes of histiocytoses and keeps hospitals up to date with the latest treatments.