The PURA Syndrome Foundation

The PURA Syndrome Foundation is a nonprofit, global foundation to serve, educate, and fund research for the PURA syndrome community. The Foundation brings together families, clinicians, and researchers to create a sense of community, helping make sure that no one feels alone by this rare disease.

Condition Awareness & Advocacy

Here is a list of conditions this partner raises awareness and advocacy for: 

Resources & Support

Connect With The Myelodysplastic Syndromes (MDS) Foundation

Patient Worthy Posts on PURA Syndrome

We believe rare disease patients are people, not a diagnosis. Through education, awareness and some humor, we help patients, caregivers and support persons by providing relevant and often inspirational news and stories.
Our goals are to share stories, cultivate strong community, provide the latest medical findings, connect people and pioneer production of patient worthy information. Help us attain these goals by telling us a little bit about yourself!

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