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National Comprehensive Cancer Network Patient Resources
The National Comprehensive Cancer Network (NCCN) has published clinical guidelines for histiocytic neoplasms. While histiocytosis does not currently have patient guidelines, there are many great resources the NCCN provides. NCCN Guidelines for Patients, NCCN Patient Resource Card, and Questions to Ask About Cancer Care.
NORD Rare Caregiver Respite Program
The National Organization for Rare Disorders (NORD) Rare Caregiver Respite Program is designed for caregivers (parent, spouse, family member, or significant other) of a child or adult diagnosed with a rare disorder. The program provides financial assistance to enable the caregiver a break from caregiving. Financial assistance will be granted up to $500 annually for those who qualify….
California Caregiver Resource Center
Founded in 1984, the California Caregiver Resource Centers are a network of 11 centers throughout California which serve family caregivers who are providing support for someone affected by chronic and debilitating health conditions https://www.caregivercalifornia.org/
Guidebook Supporting Diverse Caregivers
Guidebook Supporting Diverse Caregivers The National Alliance for Caregiving conducted structured interviews with professionals from patient advocacy groups and diverse family caregivers caring for someone who had been diagnosed with heart disease, blood cancer, lung cancer or lupus, conditions that are known to disproportionately affect diverse communities. With the guidance…
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.