Except when you’re playing the health lotto, you don’t want to be quite that special.
But for those of us who are, we become part of this colorful community. It’s true that having a rare disease can be a lot to navigate alone. Trying to get information or funding can be incredibly complex. Fortunately, there are a number of great organizations that help spread awareness and provide support.
The National Organization for Rare Diseases (NORD) helps educate the public about all types of rare diseases.
For my own condition, I stay updated through the SADS Foundation (Sudden Arrhythmia Death Syndromes).
For anyone else out there newly diagnosed or otherwise, please remember…
