Resource Library

United Kingdom

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…

Histio UK

Dedicated to promoting scientific research to uncover the causes of histiocytic diseases and ensure early diagnosis, effective treatment and a cure.

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.

Contact a Family

This is a national registered charity in the U.K. that provides support and information to families of disabled children, as well as children with rare diseases.