When faced with a rare diagnosis, it can be difficult to find others in your community who understand what you are going through. Being able to share stories, vent frustrations and connect with others makes living with a rare disease more bearable because it helps you realize that you are not alone.
Global Genes | RARE Project recently introduced our RARE Meetups™ program to help those affected by rare diseases to connect, share, learn and spread awareness within their communities. People in your community may not have the same diseases as you, but the challenges you all face are similar.
On Wednesday, November 28, 2012, a RARE Meetup™ was held in Escondido, California. Patients and parent advocates met at a local restaurant to get acquainted and to share stories. The discussion included sharing individual and family stories, exchanging information on resources and brainstorming World RARE Disease Day ideas. Gary Jackson from Parabase Genomics also attended this RARE Meetup™, and he offered sound advice and individualized responses to many of the questions people had.
Some of the rare diseases represented at this RARE Meetup™ included Intracranical Hypertension, Cryopyrin-associated periodic syndrome, Systemic Mastrocytosis, Spina Bifida, and Glutaric Academia type II. We also had a number of foundations represented such as The IHope Foundation, The NOMID Alliance, The Mastocytosis Society, FOD Support Group, and Glutaric Acidemia Type II Support.
After the RARE Meetup™, one patient advocate admitted some trepidation on attending a RARE Meetup™. Like others, she feared she would have nothing to add to the conversation and be unable to connect, but she walked away from the event feeling quite thankful that she made the decision to come. Her initial fear almost kept her away, but she still decided to attend.
To her, this RARE Meetup™ was a success. She was able to connect with others and felt very encouraged by all the people she met that night.
Connecting you with others in your community
Global Genes | RARE Project’s goal is to grow the RARE Meetups™ program. We want to connect you with others in your local community.
You are not alone in this fight. Let us help you connect you with others so you can fight rare diseases together and spread awareness within your community. We challenge you all to get out and meet others in your community and help shine a light on rare diseases.
Future RARE Meetups™ are currently scheduled in such cities as:
- Brooklyn, New York
- St. Petersburg; Florida
- Omaha, Nebraska
- Pittsburgh, Pennsylvania
- Orange County, California
If you are interested in attending a RARE Meetup™ or starting one in your area, email AshleyG@rareproject.org for more information.