Connect. Share. Support.
Have you ever met face-to-face with someone in your local community fighting a rare disease? Are you always starting from scratch with regard to getting local care? Do you feel a sense of isolation in your battle against rare disease? You are not alone.
RARE Meetups™ are designed to connect you with patients or families in your local community to enable you to share experiences, knowledge and gain support.
Meetings can be as simple as connecting at a local coffee shop, restaurant, park, zoo or school. Or you can organize an event at your home or business. The only limit is your imagination.
While disease specific foundations connect families to each other and drive research forward in particular disease, patient communities are often scattered around the globe.
Through RareMeetups™, patients and families fighting different rare and genetic diseases can connect in their local communities and take advantage of what others have learned about local resources such as finding good local medical specialists, establishing good school care and IEPs, locating state/county/regional social services … and the list goes on!
Begin connecting, sharing and supporting today.
To attend a RARE MeetUps™, please contact raremeetups@rareproject.org. Space is LIMITED so please let us know ASAP.
Upcoming Meetings
- St. Petersburg, Florida
- Pittsburgh, Pennsylvania
- Albany, New York
- Sioux Falls, North Dakota
- Chicago, Illinois
