Today is World Rare Disease Day!  Today is dedicated to raising awareness among the general public and key decision-makers about rare diseases and disorders and their impact on patient’s lives.  World Rare Disease Day gives a public and social platform for rare stories of hope, struggle, and resilience.  Join the PURA Syndrome Foundation in showing you care for rare by wearing your rare disease or PURA Syndrome t-shirts, bracelets, and buttons to raise awareness in your local community.
PURA 101 – Share our Link!
Looking for a way to describe PURA Syndrome to others? Send out this link to the PURA Syndrome Foundation’s website:
To donate in honor of your loved one, visit…/218622-world…
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