When there was nowhere left to turn, with no diagnosis, and no doctor who understood, no support group for symptoms so complex, or a syndrome so rare, and worst of all, no treatment for pain so confusing, SWAN was there for us.
The work SWAN does must not be understated. SWAN is there for all affected by rare disease and their families. The innovative ways that SWAN offer support is incredible and truly has made a profoundly positive impact on our lives.
I remember the day I first came across SWAN, I had never spoken with another person who truly understood what our journey is like. It was incredibly validating to find others who truly do understand. We now have a whole army of understanding, knowledgeable and kind families, who we can share information and support with.