About US
Mission
Vision
The APEX Collaborative is a nonprofit organization (501(c)(3) established to continue and expand upon the groundbreaking work of the NIH-sponsored Porphyrias Consortium. APEX advances fundamental, translational, and clinical research in the porphyrias and heme biosynthesis, while actively promoting awareness and knowledge among physicians, researchers, and scientists.
We support best practices in the diagnosis, management, and treatment of the eight major types of porphyria and their variants. Through national coordination and global collaboration with expert porphyria groups, APEX ensures the highest standards of care and fosters innovation in the field.
To advance research, education, and expert collaboration in the porphyrias and heme biosynthesis, improving diagnosis, treatment, and care for all affected individuals.
A world where every person with porphyria receives timely, accurate diagnosis and expert care through a global network of dedicated researchers, clinicians, and advocates working together to transform outcomes.
Our History
The APEX Collaborative was established to continue and expand upon the groundbreaking work of the NIH-sponsored Porphyrias Consortium.
In 2009, six senior American porphyria experts came together to submit a grant application to the National Institutes of Health to join the Rare Disease Clinical Research Network with the aim of facilitating basic and clinical research on the porphyrias. The Porphyrias Consortium was NIH-supported for the maximum of 15 years, which included 2 successful, competitive renewals. Over the 15 years of the Porphyrias Consortium, the six original Porphyrias Centers were joined by 7 additional sites.
The American Porphyria Expert Collaborative was established in 2020 to continue the work and programs of the Porphyrias Consortium. The original six Porphyria Centers and the subsequently added expert centers are now Porphyria Centers of Expertise.
Our Members
APEX offers a tiered membership model that includes Expert, Associate, Affiliate, Industry, and Honorary levels—each with defined qualifications to ensure meaningful engagement across the research and clinical community.
Learn more about becoming an APEX member.
Our Partners
The United Porphyrias Association is committed to improving the quality of life of the porphyria patient community and are relentlessly focused on advancing disease awareness, research, and therapies in all the porphyrias.
The International Porphyria Network (Ipnet) promotes fundamental and clinical research in the field of porphyrias, improves knowledge of the porphyrias and facilitates best practice in their treatment and diagnosis by accommodating and interconnecting expert activities across the world in the service of porphyria patients.