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.
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.