Resource Library

Canada

Health Canada’s Clinical Trials Database

Health Canada, through its Clinical Trials Database, is providing to the public a listing of specific information relating to phase I, II and III clinical trials in patients. The database is managed by Health Canada and provides a source of information about Canadian clinical trials involving human pharmaceutical and biological…

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…

Histiocytosis Association of Canada

International Histio Organization

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.