Resource Library

Home & Family Support

Pediatric Resource Guide

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.

Liam’s Lighthouse

Liam’s Lighthouse Foundation (LLF) provides educational material and awareness about Hemophagocytic lymphohistiocytosis (HLH) including Histiocytic Disorders.

Eric’s Journey Foundation

Eric’s Journey Foundation provides support and awareness for HLH and Stills Disease. Their focus is providing education and support for newly diagnosed adults.

CHANCE Association (Children Against Cancer)

CHANCE Association mission is to help Lebanese children with cancer, histiocytic and blood disorders to receive the necessary treatment and help cover expenses related to their treatment when families don’t have the financial means to do so.

Divina Foundation

The Divina Foundation was established in remembrance of Divine Angel Divina Joshi. Divina Foundation conducts various awareness programs in hospitals and provides support to families experiencing child loss.

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.

Família Histiocitose

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.

LHF Espoir

LHF Espoir mission is to raise awareness of familial hemophagocytic lymphohistiocytosis, advance research and improve care practices and support patients and families affected by familial HLH.

Associazione Italiana Linfoistiocitosi Emofagocitica (A.I.L.E.)

AILE supports families of children and adults diagnosed with Hemophagocytic lymphohistiocytosis (HLH) and promotes and funds scientific research in Italy.