Rare Disease Caregiving
Rare Disease Caregiving
The National Alliance for Caregiving, in partnership with Global Genes, is proud to present Rare Disease Caregiving in America (February 2018), a national study of 1,406 unpaid caregivers ages 18 and over living in the United States who provide care to a child or adult with a rare disease or condition. The National Institutes of Health estimates that there are approximately 7,000 rare diseases. In this study, over 400 unique rare diseases and conditions were captured, with the most commonly mentioned rare conditions as follows: Cystic Fibrosis (9%), Pulmonary arterial hypertension (4%), Atypical hemolytic uremic syndrome (2%), Ehlers-Donlos syndromes (2%), Fabry disease (2%), Congenital central hypoventilation syndrome (2%), and PANDAS (2%).
An independent Advisory Committee of national caregiving experts, clinicians, and patient/caregiving advocates reviewed the survey questionnaire, initial report findings, and final report before its release. Researchers at Greenwald & Associates administered the survey and conducted the data analysis.
The research made possible through funding from the following organizations:
The Allergan Foundation, Alexion Pharmaceuticals Inc., Amgen, Amicus Therapeutics, Biogen, the Family Support Research and Training Center (FSRTC) at the University of Illinois-Chicago, Mallinckrodt Pharmaceuticals, Retrophin, Shire, Ultragenyx Pharmaceutical, Inc., and Vertex Pharmaceuticals
For questions or comments about the study, please contact the Alliance at (301) 718-8444 or firstname.lastname@example.org.
National Report: Rare Disease Caregiving in America
Rare Disease Caregiving in America (February 2018) (PDF)
Rare Disease Caregiving in America (February 2018) is a national research study capturing the experiences of more than 1,400 family caregivers of children and adults with a rare disease, condition, or disorder across 400 different diseases. Findings in this first-of-its-kind national snapshot paint a picture of friends and families facing emotional, financial, physical, and social strain with little support from outside resources.
Arunabh Talwar MD, FCCP
Hofstra Northwell School of Medicine
Director, Advanced Lung Disease Program
Pulmonary Critical Care Sleep Medicine
Department Internal Medicine
Amy Brin Miller, MSN, MA, PCNS-BS
Erica Ramos, MS, LCGC
Clinical Head, Healthy Genomes and Staff Genetic Counselor, Illumina
President-Elect, National Society of Genetic Counselors
Principal, JF Campbell Consultants
Family Caregiver, for daughter with Alternating Hemiplegia of Childhood
President, The Bonnell Foundation
Lynn Adams, PhD
Scientist, Palliative Care and End-of-Life
Mousumi Bose, PhD
Assistant Professor in Applied Nutrition, Montclair State University
Medical/Scientific Research Liaison, The Global Foundation for Peroxisomal Disorders
Former Family Caregiver and Mother to Ilan, 8.18.2010-10.23.2011
President/Founder, Parent Project Muscular Dystrophy
Former Family Caregiver and Mother to Christopher and Patrick
Tamar Heller, PhD
Professor and Head, Disability and Human Development
Director, Institute on Disability and Human Development (UCEDD)
Director, Rehabilitation Research and Training Center on Aging with Developmental Disabilities
Sameer Verma, M.D.
Clinical Research Coordinator
Pulmonary, Critical Care & Sleep Medicine