1/2 Page in 2024 Conference Program ($100)

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Annual Conference (7)
Awareness (3)
News (30)
Newsletter (8)
Research (6)
Resources (1)
Siblings (1)
Stories (4)
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Recent Posts

Feature your PURAPerfect Child or Relative!
New! PURA Sibling Support & Meet Up
Raising Awareness for Rare Disease Day
Today is World Rare Disease Day!
New! Self-Care for Caregivers Resources

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The PURA Syndrome Foundation is a registered 501(c)(3) charity organization. Information on this website is not a substitute for personal medical advice. Families should consult a medically qualified physician in all matters relating to genetic diagnosis, management, and health. Information about PURA and genetics in general is a very fast moving area and while the information on this website is regarded as the best at the time of publication, some facts may change later.

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