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 a global healthcare advocacy organization established to provide resources and support to families impacted by Trisomy 18 (Edwards Syndrome) and other rare diseases.
The E.WE Foundation offers three core programs – LEAP, ZEBRA, and STRIPE – to provide comprehensive education and assistance tailored to the unique needs of rare disease patients, families, and the providers who serve them. From empowering individuals to make informed decisions to offering holistic support through counseling, educational resources, and assistance programs, the E.WE Foundation strives to alleviate social burdens and foster a community of compassionate care and support.
The E.WE Foundation is an accredited continuing education provider for social services professionals and some other related professions.
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.
