Representing the Patient Voice at This Year’s Porphyria Congress

Columnist Kristen Wheeden looks forward to 'Thinking Porphyria, Working Together' in Bulgaria

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by Kristen Wheeden |

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Bulgaria. Honestly, until recently, I could barely place the country on a world map. Yet over the past few months, I’ve had the honor of organizing a patient day during this year’s International Congress on Porphyrins and Porphyrias (ICPP), set to take place in Sofia, Bulgaria, Sept. 4–7.

Participating in international conferences allows me to share the porphyria patient voice and learn from other leaders. It’s an important part of being an advocate, a role I’ve taken on since my youngest son, Brady, was diagnosed with erythropoietic protoporphyria (EPP) in 2009.

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The Porphyria Patient Voice Is Essential to Therapeutic Progress

EPP is one of eight main types of porphyria. With EPP, exposure to sunlight causes debilitating pain. Since Brady’s diagnosis, I have rallied alongside other patients and caregivers to advocate for faster diagnoses, better management strategies, and new treatment options for each distinct type of porphyria.

ICPP is organized by the European Porphyria Network (EPNET), a nonprofit scientific organization whose mission is to “promote fundamental and clinical research in the field of porphyrias, improve knowledge of the porphyrias and facilitate best practice in their treatment and diagnosis by accommodating and interconnecting expert activities across Europe in the service of porphyria patients.”

EPNET leaders work closely with physicians and researchers affiliated with the Porphyrias Consortium in the U.S.

This year’s ICPP motto, “Thinking Porphyria, Working Together,” demonstrates how the best minds in the field intend to join forces. In essence, the conference is a meeting of the doers and thinkers who are furthering porphyria research and therapies.

Sofia was never a coveted destination for me, but now I can’t wait to get there. Though I wonder if I will even exit the hotel to enjoy the sights I hear about!

Working with local physicians and patients in Sofia has been a joy, as they have shared their culture with me. Advancing science and creating space for key stakeholders to collaborate is their priority for this meeting — but showcasing the beauty of their country is a close second.

My greater hope is to witness the magic that happens when patients, physicians, researchers, and industry partners unite. At a conference, everyone’s purpose is to improve the quality of life for patients who live with porphyria.

Patient day is sure to be a success, with an agenda that includes global advocacy updates, caregiver and patient testimonials, and time for networking. There will even be a role-reversal session, in which student doctors ask a panel of patients questions to better understand their experiences.

This week, I’ll fly for hours and hours, crossing many time zones to land in a place I’ve never been. I’ll wish my husband a happy 24th anniversary from across the globe and hopefully return invigorated and inspired. Then I’ll get to share with Brady all the good work that is going on around the world to help patients like him.

Приятно пътуване! (Bon voyage!)

Note: Porphyria News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Porphyria News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to porphyria.


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