Global Porphyria Day aims to build awareness through art, personal stories
Supporters worldwide encouraged to wear signature purple on May 18
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May 18 is Global Porphyria Day, and advocates worldwide are planning several initiatives to raise awareness of this group of genetic diseases — and improve understanding of the challenges of living with porphyria.
“As a rare disease, porphyria is often unheard of, unseen and misunderstood,” the United Porphyrias Association (UPA) states on its website. “Global Porphyria Day is an annual day of awareness, where we come together as an international community to share our stories and advocate for greater understanding, timely diagnosis and a world free from the pain and challenges of porphyria.”
The UPA was founded in 2022 by a group of porphyria patients, researchers, and clinicians, all focused on increasing awareness and improving care for people with porphyrias. Porphyrias are genetic disorders marked by the toxic buildup of molecules called porphyrins. Depending on the specific type of porphyria, patients may experience a range of symptoms, from attacks of abdominal pain to unusual skin sensitivity to sunlight.
For this year’s awareness day, to be marked this Monday, community members are encouraged to don purple to note their support. A free purple awareness ribbon can be ordered online; the ribbons bear the UPA logo and the words “Purple for Porphyria.”
In the lead-up to the event, the UPA is running an International Porphyria Art Challenge. Members of the porphyria community are encouraged to submit a piece of artwork that aims to tell a story about porphyria. All mediums of art are eligible, from written pieces to visual art to performances. Submissions must be of original works, made without the use of AI. Exceptions are allowed for translations of original work from other languages to English.
Artists can submit their piece via an online portal by May 17. Then, from Global Porphyria Day through the start of June, the community will be able to vote for their favorite piece. The creator of the winning piece will receive a cash prize of $1,000, while second- and third-place artists will receive $750 and $250, respectively.
The UPA is also encouraging community members to share their experiences with porphyria on social media. This year, the organization is specifically asking people affected by porphyria to share the one thing they wish everyone understood about the disease. Posts may include videos or can take advantage of premade templates and graphics from the UPA. The organization asks community members to tag their posts with the hashtag #OneThing Porphyria, and also to tag the UPA @UnitedPorphyrias.
Supporters wearing purple on the event day can share photos on social media with the hashtags #PurpleforPorphyria and #PorphyriaAwareness. Images will be collected by the UPA for a Global Porphyria Day gallery on its website.
All advocates, with porphyria or not, urged to take part in research
The UPA is also encouraging people both with and without porphyria to get involved in research in the year ahead. The organization is collaborating with the pharmaceutical company Portal Therapeutics on an observational study to track the evolution of disease in people with erythropoietic protoporphyria (EPP) or X-linked protoporphyria (XLP). Individuals with these forms of the disease can submit their interest via an online portal.
Those without porphyria are also encouraged to volunteer as possible controls for porphyria studies via a separate form.
In addition to the upcoming global day of awareness, the UPA is helping run several upcoming porphyria-focused events, including a camp for sun-sensitive youngsters. Its Porphyria Palooza event will be held Oct. 9-11 in Kansas City, Missouri.
