About Us
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
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UPA Board of Directors
An enthusiastic and committed Board of Directors provides governance, oversight, and direction to the UPA.
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President's Council
A 15-member President’s Council, which includes patients and advocates representing all types of porphyria, advises the UPA to ensure the patient voice is central in all our efforts
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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.
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Our staff
Our day-to-day work is supported by a fantastic staff team.
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.
The National Organization for Rare Disorders (NORD) advances practical, meaningful, and enduring change so people with rare diseases can live their fullest and best lives. Every day, we elevate care, advance research, and drive policy in a purposeful and holistic manner to lift up the rare disease community.
Rare & Ready: A Genetic Condition Coalition believes policies must make sure that patients with rare or genetic conditions can get the care they need. These patients deserve access to new FDA-approved therapies as soon as they are available. We need to mitigate state Medicaid program hurdles that limit access.
The Coalition of Skin Diseases (CSD) is a 501c3 nonprofit organization that advocates on behalf of the 84 million Americans living with a skin condition.
Haystack Project is dedicated to ensuring patient access to treatment options for the rare and especially ultra-rare community. Policymakers must consider the incentives and policies that insurance companies, both public and private, use to deter patient access to the treatments they have waited for and often actively participated in bringing to market.
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.
Porphyria News is a digital platform intended to provide the porphyria community with the most recent news and information on the disease, as well as first-hand community perspectives from our patient and caregiver columnists.
The publishing team at Porphyria News is made up of science writers and editors, most of whom have PhDs in the life sciences; veteran journalists; and columnists who are members of the porphyria community.
Patient Worthy® is an online publication that provides relevant information to rare disease patients, caregivers and advocates alike.
Through education, awareness and a touch of humor, our goal is to inspire those in the rare disease community to tackle their chronic conditions, armed with the knowledge that they are not alone in their fight. We root for new treatment options, support spreading awareness and encourage the occasionally tough conversation.
Donor Confidence
United Porphyrias Association is a 501(c)(3) non-profit charitable organization.
United Porphyrias maintains minimum operating expenses. The Board of Directors is a group of committed volunteers. No board member receives compensation. Your generous donation brings us one step closer to fulfilling our vision of a world without the pain and challenges of porphyria.
Financial statements will be made available upon request.
Thank you for your support!