Resource Library

Emotional Support

Post-Traumatic Stress Disorder in Rare Caregivers

POST TRAUMATIC STRESS DISORDER FLYER RARE CAREGIVER -PDF Download

Children and Young People with Cancer: A Parent’s Guide

This booklet, developed by Children’s Cancer & Leukemia Group, is for parents and carers of a child who has been diagnosed with cancer. We hope it answers your questions and helps you deal with some of the feelings you may have. This booklet gives information about children’s cancers, the treatments…

Helping Parents Heal

Helping Parents Heal (HPH) is a non-profit organization dedicated to assisting bereaved parents. Through support and resources offered, we aspire to help individuals become “Shining Light Parents”—meaning a shift from a state of emotional heaviness to one of hopefulness and greater peace of mind. HPH goes a step beyond other…

Stress Relief Products for Caregivers from MyCaringPlan

My Caring Plan is a website focused on caregiving that has been featured on PBS. It takes a very special person to dedicate themselves to the care of another. And yet, caregiving is often one of the most stressful jobs, in large part due to the vital importance of the…

Caregiver Resources from MyCaringPlan

My Caring Plan is a website focused on caregiving that has been featured on PBS. As a family caregiver, you may feel it is nearly impossible to take a break. This role often involves an around-the-clock commitment to your loved one, so you may feel you need to be available…

Caregiver Burnout Resources from MyCaringPlan

My Caring Plan is a website focused on caregiving that has been featured on PBS. What to do when compassion becomes too heavy? Caregiver burnout is one of the first things to look out for. Some would say that a loved one’s illness is harder on the family members than…

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.

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.