Resource Library

United States

NiceRx

NiceRx is a patient advocacy service that helps individuals access medications through Patient Assistance Programs for a set price of $49/month per medication. They work with over 200 U.S. based pharmaceutical manufacturers to offer over 1,500 FDA approved name medications. There is no limit to the number of medications you…

Cancer and Careers

As the number of cancer survivors in the U.S. continues to grow, there is an increasing need for resources and support to help them get back to everyday life and work after diagnosis and treatment. Cancer and Careers helps more than 500,000 people each year — online, in print and…

A Kid Again

For over 27 years, A Kid Again has brought Hope, Happiness and Healing to families that have a child with a life threatening conditions. They provide cost free, year round, fun filled events we call adventures for the entire immediate family to participate in. A Kid Again serves kids from birth…

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.

US Veteran Affairs

The following has been compiled by the experience of long-time Histio Community advocates to help you navigate the care you may need and resources you may be eligible to receive. “Disability Compensation is a tax-free monetary benefit paid to Veterans with disabilities that are the result of a disease or…

USA Employee Retirement Income Security Act (ERISA)

The Employee Retirement Income Security Act of 1974 (ERISA) is a federal law that sets minimum standards for most voluntarily established retirement and health plans in private industry to provide protection for individuals in these plans. ERISA also applies to private long-term and short-term disability insurance coverage provided by the…

Machaon Diagnostics HLH Testing

The HLH genetic panel from Machaon Diagnostics is the most comprehensive and fastest, with a STAT turnaround time of two business days. Clinical consultation is available after testing, informed by years of experience with HLH.  They can also streamline the determination of trial eligibility. Founded in 2003, Machaon Diagnostics, Inc….

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…

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.