There are many ways to get involved within the rare disease community! From sharing your story online, to join advocates Lauren Foster Cox and Skye Miu Steppe lobbying on Capitol Hill! Here are some of our favorite moments from over the years.
Another way to get involved is searching Facebook for a support group specific to your disease! There are tons of ways to gain the help you are looking for, simply by searching.
Have something you want added to our website? Please let us know!!!
"By taking the step and finding my own support group I've found a family I didn't know I needed."