Caregivers are not often acknowledged when considering policy and social support measures for those affected by rare disease. A study of rare disease caregivers recently completed by the National Alliance for Caregiving in partnership with Global Genes demonstrates both the critical role and the unmet support needs of caregivers. Hear from leaders involved in this study about the key findings and policy solutions to ensure that the strengths of caregivers are included in rare disease research and treatment and that the needs of everyone affected by rare disease are met.
Speaker: C. Grace Whiting, JD, President and Chief Executive Officer, National Alliance for Caregiving
Speaker: Mousumi Bose, PhD, Scientific Advisory Board Committee Chair, Global Foundation for Peroxisomal Disorders, and Assistant Professor, Montclair State University
Day 1, Track 1