Project Description

Partnership and Progress for a Rare Disease Community

How Inspire and HNF collaborated to grow the Charcot-Marie-Tooth community
and accelerate medical progress

About This Infographic

Inspire partners with approximately thirty rare disease non-profit patient organizations to create online support communities where rare patients and caregivers can connect to share support and information. One Inspire partner, the Hereditary Neuropathy Foundation (HNF), supports individuals affected by Charcot-Marie-Tooth (CMT), a rare progressive neurological disease. HNF leveraged its CMT support community on Inspire to support research and advocacy initiatives focused on improving the quality of life of CMT patients. This infographic presented at a poster session at Rare Disease Day at NIH presents some of this work – most notably, the recognition of pain as a major treatment endpoint and clinical trial outcome measure. 

Download “Partnership and Progress for a Rare Disease Community”

Download “Partnership and Progress for a Rare Disease Community”