Sobre Nosotros
The Future of Porphyria
United Porphyrias Association (UPA), a 501(c)3 non-profit patient advocacy group, was founded in January 2022 by a team of patient advocates, expert physicians, and researchers.
Our Mission:
We are 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.
A world where patients are free from the pain and challenges of porphyria.
Our Vision:
Our Team
-
Scientific Advisory Board
Our 22-member Scientific Advisory Board is comprised of the country’s leading porphyria experts and counsels the UPA on medical, scientific, and research topics to help the UPA best support patients and the physician community in their treatment of porphyria patients.
Our Partners and Collaborators
United Porphyrias is convinced that fostering collaboration among patients, caregivers, physicians, researchers, pharmaceutical partners, and regulators is essential to increasing awareness of the porphyrias, improving access to current treatments, and developing new therapies.
Our Sister Organizations:
Our Partners:
The American Porphyrias Expert Collaborative facilitates best practices in the diagnosis, management and treatment of the eight major porphyrias and their variants by facilitating, and coordinating expert activities in the United States and by developing collaborative arrangements with expert porphyria groups worldwide.
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.
The Global Porphyria Advocacy Coalition (GPAC) operates as an umbrella organization for national porphyria patient advocacy organizations, representing all types of porphyria. This organization will establish and maintain a global network that seeks to support all individuals impacted by porphyria and to safeguard their interests.
The Porphyrias Consortium is an NIH-Funded Rare Diseases Clinical Research Network Consortium. The Consortium includes six of the leading porphyria centers in the United States, as well as seven satellite sites, that provide expertise and experience in the diagnosis and management of patients with all the porphyrias.
Global Genes is a 501(c)(3) non-profit organization dedicated to eliminating the burdens and challenges of rare diseases for patients and families globally.
The International Alliance of Dermatology Patient Organizations (also known as GlobalSkin) is a unique global alliance, committed to improving the lives of patients worldwide. We nurture relationships with members, partners and all involved in healthcare - building dialogue with decision-makers around the globe to promote patient-centric healthcare. GlobalSkin's work is founded on three pillars: research, advocacy and support.
Rare Diseases International (RDI) is the global alliance of people living with a rare disease of all nationalities across all rare diseases. RDI’s mission is to be a strong common voice on behalf of rare disease patients around the world, to advocate for rare diseases as an international public health priority and to represent its members and enhance their capacities.
