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Spanish-Language Brochures

Histio.org/Spanish-Language-Brochures

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.

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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…

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OR Association

OR Association fights to improve the quality of life of children and adolescents diagnosed with Langerhans cell histiocytosis (LCH). They provide emotional support for the whole family through workshops, raise awareness, host congresses for physicians and researchers and fund scientific research.

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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.

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