The Global Genes Project today announced the development of the RARE Meetups™ program. The purpose of RARE Meetups™ is to connect people who are dealing with rare and genetic diseases in their local communities. These meetings are disease agnostic – meaning it doesn’t matter what disease you are affiliated with. There is a tremendous amount of information, insight, knowledge and support that can be shared by people fighting rare diseases.
It’s about coming together as a community, regardless of disease, sharing experiences and knowledge to help provide support! — Nicole Boice, Global Genes Project
The problem many rare disease communities face is that they may be connected globally to a network of few, however, they don’t always have the opportunity to connect with others in their locally community. The disease connection is critical on so many levels, but so is connecting at home. There are many unique challenges that families with chronic conditions face within their own Cities and States — finding qualified medical professionals, getting feedback on care, reimbursement and insurance issues, dealing with the educational system, etc. The connection for many includes the need for help, information and support on a daily basis.
Global Genes and its patient advocacy community continues to work together to develop programs that are meaningful, impactful and that fill a void that so often happens when part of these ultra-rare communities.
This new program is currently being developed and by parent advocacy leaders around the world.