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Advancing Awareness, Research and Therapies

Hello Megan,

GLOBAL EPP CONNECT

Sunday, June 26th, 11AM EST

United Porphyrias Association is proud to share an invitation for EPP patients, families, and caregivers! In coordination with Global Porphyria Advocacy Coalition (GPAC), the umbrella organization for porphyria patient advocacy groups across the globe, we are delighted to invite you to a virtual meeting.

EPP Connect is a first ever event to bring EPP patients together from across the world.

The gathering will be on Zoom and will last 1 ½ hours. There will be breakout rooms in different languages and for different age groups too – all are welcome!

We are very excited and look forward to meeting all of you who are affected by EPP, whether a patient, parent or caregiver – we can’t wait to talk with you all!

Once registered, an email confirmation will be sent and Zoom details for the gathering will be emailed directly to you in the week of the meeting!

All attendees must register!

Click below to register

DRUG SAFETY IN ACUTE HEPATIC PORPHYRIA

Recent work in Acute Hepatic Porphyria (AHP) includes a study about drug safety that was implemented by a team of researchers. Herbert Bonkovsky M.D, Porphyria Expert, and Christopher Ma M.D, (both of Wake Forest School of Medicine) spearheaded the experimental work.

The study of drug safety in AHP is ongoing and UPA is pleased to support this important effort.

Read the Publication Here

The experts of the Porphyrias Consortium recommend the NAPOS Drug Safety in AHP list as the most updated resource.

NAPOS DRUG SAFETY LIST

PORPHYRIAS FUND

HealthWell offers up to $4,000 in financial assistance to help reduce the cost of insurance premiums or medication copayment associated with the treatment and management of the various forms of Porphyria.

To learn more about the fund, determine eligibility, and apply for assistance call (800) 675-8416 to speak to a HealthWell representative, visit www.healthwellfoundation.org or call United Porphyrias for support at (800) 868-1292.

APPLY HERE

NORD PLATINUM

The United Porphyrias Association is now officially a platinum member of NORD (The National Organization for Rare Disorders)!

NORD Platinum level membership represents the highest level of integrity and transparency for patient advocacy organizations involved in medical research, drug development, medical education, and registries in the U.S.

The platinum seal is not only a stamp of approval and accountability for our organization but also a way to bring national attention to the porphyrias community.

We are proud to be a part of such a wonderful organization and to harness the collective power of 300 rare disease groups working together.

To read more about NORD click below.

LEARN MORE 

GLOBAL GENES

The United Porphyias Association is pleased to announce not only our membership in the Global Genes Global Advocacy Alliance, but we are also proud to be a founding member.

The mission of Global Genes Mission is to provide hope for the more than 400 million people affected by rare disease around the globe.

They fulfill their mission by helping patients find and build communities, gain access to information and resources, connect to researchers, clinicians, industry, government, and other stakeholders, share data and experiences, stand up, stand out, and become effective advocates on their own behalf.

To read more about Global Genes click below

LEARN MORE