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ALERT! NEW PUBLICATION FOR EPP AND XLP – DISEASE GUIDELINES
Physicians of the Porphyrias Consortium, led by Manisha Balwani, MD (Porphyria Expert, Icahn School of Medicine at Mount Sinai), have released an important publication “Evidence-based consensus guidelines for the diagnosis and management of erythropoietic protoporphyria and X-linked protoporphyria” in the Journal of the American Academy of Dermatology. These guidelines address the diagnosis, monitoring, and management of patients with EPP and XLP.
PAIN AWARENESS MONTH
September is Pain Awareness Month. Research shows that 50 million Americans live with chronic pain. Porphyria patients experience both acute and chronic pain as a common thread among patients. Key findings from a recent report indicate that “Chronic pain has devastating consequences on function, quality of life, and mental health” which restricts the ability to participate in routine activities.
UPA will be highlighting pain facts and opportunities to engage through the remainder of September on social media platforms. Please join in the pain awareness campaign by sharing these posts and your porphyria pain journey.
#PainAwarenessMonth #Porphyria Pain #Porphyria Together
WHAT’S UP WORKSHOP!
September 29, 6PM Central
You are invited to join the first What's Up Workshop on Thursday, September 29th at 6pm Central.
The topic: PORPHYRIA DIAGNOSIS/MISDIAGNOSIS JOURNEY. Moderating by Claire Richmond, the workshop will bring our community together - across the porphyrias - to discuss topics that impact us.
The discussion will guide the development of new resources. For us, by us!
Please email info@porphyria.org to register.
AMERICAN ACADEMY OF DERMATOLOGY LEGISLATIVE CONFERENCE AND HILL DAY
September 18-20, 2022
United Porphyrias will join the largest gathering of dermatologists and patient advocates in the country on Capitol Hill to discuss issues facing our patient community and present them to Congress. If you would like to share your story through UPA, please email info@porphyria.org.
COALITION OF SKIN DISEASES HILL DAY
September 20, 2022
UPA will take part in the Coalition of Skin Diseases Legislative Conference and Hill Day 2022. Issues that face porphyria will be highlighted including delayed diagnosis and access to treatment!
IN-PERSON PATIENT MEETING IN BOSTON
September 25, 2022
Join United Porphyrias and the Massachusetts General Hospital (MGH) Porhyria 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 at info@porpyhria.org
IN-PERSON PATIENT MEETING IN WINSTON-SALEM, NC
October 18, 2022
Join United Porphyrias and the Atrium Health Wake-Forest Baptist Porphryia Expert, Dr. Herbert Bonkovsky,for an educational and networking event. Bring your questions and meet others who are impacted by porphyria. Contact UPA for registration and address information at info@porpyhria.org.
The United Porphyrias Association is committed to improving the quality of life of the porphyria patient community and is 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.
"I was diagnosed at the age of 6 with EPP after my parents noticed that every time I was outside I was experiencing anguishing discomfort. I never fully comprehended my diagnosis until I was able to connect with others. With the help of the UPA, I want to be able to help others live more comfortably with EPP and support the vision of a world where patients are free from the pain and challenges of porphyria. "
