State Resources

Alabama Rare

Alabama Rare focuses on uniting Alabamians around the rare disease population within our state. It provides support for individuals and families as well as educates the broader community about rare diseases. The organization collaborates with stakeholders in Alabama to create awareness of the rare disease population’s needs and advocate for necessary change to improve healthcare delivery.

The PTEN Foundation

The PTEN Hamartoma Tumor Syndrome Foundation was founded to find treatments or therapies for PTEN Syndromes. Our team is developing research tools to complement existing research, including our IRB-approved patient registry and biorepository. We fund research, provide PHTS education, and supporting patients.

The E.WE Foundation

The E.WE (/ē/·/wē/) Foundation is an IRS approved 501(c)(3) healthcare advocacy organization established to support families affected by Edwards Syndrome, commonly known as Trisomy 18.

PROGRAMS:

  • LEAP is an instructional resource program promoting health literacy, community education, patient advocacy, and public policy.
  • ZEBRA is a comfort care program offering support and end-of-life solutions to families living with medical complexities, rare disorders, and disability. 
  • STRIPE is an economic assistance program designed to help with the financial burden associated with caring for individuals living with Trisomy 18.

Submit an Alabama Resource:

Are you an Alabama-based group offering care or resources for individuals with rare diseases and their families? Submit the below form to be included on our site.

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