This is a support for CADASIL patients, people 'at risk' for CADASIL, caregivers, family members, friends, health professionals and anyone interested supporting the CADASIL community in the Greater Philadelphia area.
I'd like to start up a Greater Philadelphia CADASIL support group for patients, those 'at risk' for CADASIL, and for caregivers, friends & colleagues of CADASIL patients.
The 1st meeting will be in the King of Prussia area during February or March. Time and date are TBD
The intent of the support group is to:
1. share our personal stories and create a local, in-person community so we can better support each other and enhance our understanding of the disease
2. create a local network of doctors & healthcare providers based on the community's experience to date and to grow that network via advocacy and awareness
3. catalog the social services available in our network that can assist patients and families
I started the group because there wasn't any other type of group like this. I've met some great folks in the group who have become close friends and have also met some amazing business owners.
— Bill, started New York City Gay Craft Beer Lovers