Toronto Parent 2 Parent Resource Network
Our monthly meetings provide a combination of peer support, networking and opportunities to listen to a variety of guest speakers. This forum is intended to be a place of support and information for families affected by a variety of rare diseases. New parents always welcome.
Topic: RareConnect: connecting rare disease patients globally
Speaker: Dorin Manase, Bioinformatician
Centre for Computational Medicine, SickKids
- RareConnect encourages discussion between patients to reduce the isolation they feel
- RareConnect communities are welcoming and moderated by patient advocacy organizations
- RareConnect has research potential and is hoping to implement an online health survey platform