A Farm Fundraiser- Raising awareness for EPP

The McKillop Family has gone above and beyond to support UPA! Morgan (age 12), who lives with EPP, used her time and talent this summer to grow a garden full of fresh veggies alongside her dad. The fruits of their labor support programs of the UPA. We are grateful for Morgan - her resilience and kindness are an inspiration!

CHILDREN/PARENTS NEEDED FOR EPP/XLP INTERVIEWS

UPA is seeking children with EPP or XLP and their parents/guardians to participate in a research study for a pharmaceutical company.

The study consists of a 1-hour web-based interview where you will give us your opinion about a daily e-diary that we are developing to use in future EPP/XLP clinical trials for children.

To participate, you must be a parent/guardian of a child with EPP or XLP, ages 6-11. You must also consent to an interview with your child aged 6-11. For participation, you and your child will each receive $100 for the interview.

If you are interested in learning more about the study, please contact Kristen Wheeden at kristen@porphyria.org or call 800-868-1292.

BOSTON... HERE WE COME!

Join United Porphyrias and the Massachusetts General Hospital (MGH) Porphyria Center leaders Dr. Amy Dickey and Dr. Rebecca Karp-Leaf for an educational and networking event. Bring your questions and meet others who are impacted by porphyria.

Contact UPA for registration and address information.

We're deep in summer and our need for protective clothing! Please enjoy this Coolibar coupon! 

The International Congress of Porphyrins and Porphyrias (ICPP) 2022 in Sofia, Bulgaria is fast approaching! Organized by the European Porphyria Network (Epnet), this congress brings together patients, researchers, experts and scholars for three days of networking and learning from the best in the field.   

UPA is excited to participate in both the Scientific Conference and Patient Day. Members of the UPA Scientific Advisory Board will Chair and/or Present during sessions of the Scientific Program. Dr. Karl Anderson (UTMB), Dr. Robert Desnick (MSSM), Dr. Amy Dickey (MGH), Dr. John Phillips (UofU), Dr. Bruce Wang (UCSF), and Dr. Makiko Yasuda (MSSM) will join global colleagues discussing current and emerging topics in the porphyrias.

Kristen Wheeden, UPA President, will Chair a Patient Day session titled Global Patient Advocacy Updates. During this session, presenters from the UK, US, and Switzerland will offer global updates on advocacy, and developments in the erythropoietic and acute hepatic porphyrias.

ICPP is sponsored by our pharmaceutical partners – Alnylam Pharmaceuticals, Clinuvel Pharmaceuticals, Disc Medicine, Mitsubishi Tanabe Pharma, and Recordati Rare Diseases.

If you can’t get to Bulgaria, we’ll bring Bulgaria to you! Make sure to follow UPA on our social media channels as we come to you live on September 4^th!

 Add United Porphyrias INSTA, FACEBOOK, TWITTER to your social media feeds.