RNE realizes it is very important for patients and families to connect with others facing similar medical problems, and to build friendships within their disease-specific communities.
RNE is also aware many excellent regional and national organizations exist that work hard to advocate for their disease-specific communities; educating and lobbying for the unique needs of their patients and families.
RNE applauds these advocates and organizations for the enormous benefit they provide to the rare disease community, and wants to help bridge gaps between these groups and the patients who need them.
RNE's mission includes connecting rare disease patients and families with resources designed for their needs. We are creating a list of disease-specific organizations and advocacy groups.
We would love to add YOUR group to our list!
If your organization is not yet listed, please let us know! Send your group name, a web address to which we can link, and a brief description of your group's mission to info@rarenewengland.org
(Note: RNE is in progress of uploading the many different organizations and will show a much broader listing soon, along with a brief definition of what each has to offer.)