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Aug. 26, 2022

TOPIC: #NORDintheNews

What Rare Disease Patient Advocacy Groups Are Doing to Mitigate the Effects of Disparities

Posted by Rohan Narayanan

Rare disease patients experience inequities in diagnosis, care, and research due to a paucity of research, lack of treatments, complex needs for clinical care, and small and dispersed patient populations, among other reasons. Marginalized communities – like low-income, rural, communities of color, LGBTQ, and religious communities – experience additional barriers in accessing clinical care and are underrepresented in research and clinical trials.

NORD’s Director of Membership, Debbie Drell, along with patient advocate, Ashanthi DeSilva, and the President and CEO of the Alliance to Cure Cavernous Malformation, Connie Lee, co-authored the article for the prestigious rare disease journal, Advances in Pulmonary Hypertension, which defined disparities in rare diseases, provided case studies from NORD Member Organizations, and highlighted NORD’s work in mitigating the effects of health disparities.

Read the full piece.