Resource Library

Emotional Support

US Pain Foundation

The US Pain Foundation is an organization serving people with pain through information, advocacy, and support.

United Way 2-1-1

2-1-1’s Health Care Resource Guide is intended to provide information on state, federal and privately purchased health insurance programs for Connecticut residents.

Be The Match Jason Carter Clinical Trials Search and Support

Be The Match Jason Carter Clinical Trials Search and Support helps people with blood cancers and blood disorders, including HLH, LCH and malignant histiocytosis, find and join clinical trials. They offer free one-on-one support with a clinical trial navigator, an online clinical trial search tool, educational resources, and a grant…

Histiozytose Hilfe e.V.

Histiozytose Hilfe e.V. offers support to patients and their families suffering from histiocytosis in Germany.

Histio UK

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

Hemophagocytic Lymphohistiocytosis (HLH) – Info from CHOP

Information on HLH from the Children’s Hospital of Philadelphia, including disease information and patient and family resources.

Global Genes

Global Genes® is one of the leading rare disease patient advocacy organizations in the world. The non-profit organization promotes the needs of the rare disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon®.

First Steps

First Steps’ goal is to assure that all Indiana families with infants and toddlers experiencing developmental delays or disabilities have access to early intervention services close to home when they need them.

Family Support Program of North Carolina

Family Support Network of North Carolina promotes and provides support for families with children who have special needs.

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.