RESEARCH
Rare Fathers & Mothers
The Caregiving Experiences of Fathers and Mothers of Children With Rare Diseases in Italy: Challenges and Social Support Perceptions. A survey of 15 caregivers with rare children, focus on both mother and father and their individual challenges.
COVID-19 Impact
NIH supported research survey to examine impact of COVID-19 on rare diseases community. The article details how people in the rare diseases community are being impacted by COVID-19 in unique ways, and why this survey is helping them.
Challenges: Global Genes Report
A rare disease impact report that quantifies patient and caregiver challenges. It takes more than 7 years on average for a patient with rare disease to receive the proper diagnosis. This uncertainty of not knowing what disease their children have, takes an emotional toll on the parents and poses great financial challenges of paying the medical bills.
Portrait of a Rare Caregiver
A Rare Caregiver infographic. 89% of rare caregivers need to educate the healthcare professionals about the recipient's rare disease; 67% say that providing care is emotionally stressful.
Quality of Life
The Quality of Life of Caregivers who Care for a Child with a Rare Disease – Perception of Changes as a Result of Care in the Czech Republic. 30% of rare caregivers say that they experience isolation from society as a result of caregiving.
Rare Disease Caregiving in America
One out of four caregivers (24%) reported that there were other children in the household under 18 who helped to support the person with the rare disease; rare caregivers are not just parents, they can be teenagers as well.
SCIENTIFIC Research
An online database that stores information about different rare diseases and provides links to other trustworthy sites for more information.
RARECAST - PODCAST BY RARE GENES
A podcast that talks about recent breakthroughs in genetic therapies and rare disease research.
NORD (National Organization for Rare Diseases)
Online support community committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.