Global organization prepares for Saturday start of Porphyria Awareness Week
Note: This story was updated April 1, 2022, to add events being held by Global Porphyria Advocacy Coalition, the umbrella organization for porphyria patient advocacy organizations.
From hosting film watch parties to posting photos of pets, supporters are set to mark Porphyria Awareness Week (PAW), observed April 2–9 this year, to call attention to the group of inherited disorders that affect 1 in 500 to 1 in 50,000 individuals around the world.
The aim is to heighten awareness of porphyria among the public, as well as lawmakers, researchers, and other stakeholders.
The Global Porphyria Advocacy Coalition (GPAC), the umbrella organization for porphyria patient advocacy organizations, is spearheading the week and offering downloadable resources, including social media banners, logos, and an event sign.
Those resources also include a media toolkit for member organizations and individual supporters that contains shareable information about PAW, as well as disease types, symptoms, and important community issues, such as treatment access and delayed diagnoses.
There’s also information about GPAC’s #PurpleforPorphyria campaign, in which, on April 8, supporters are asked to wear or exhibit something purple — the color that represents the disorder — and share that activity on social media.
For its part, the American Porphyria Foundation (APF), which is part of GPAC, has a host of activities planned to #Fightporphyriatogether, starting Friday with a “pre-kickoff” Zoom event with Sanjay Hapani, MD, a hematology and oncology specialist. Details are available on the APF website.
“During this week, patients are encouraged to heighten awareness in their own communities while enjoying a series of community building activities,” the APF states in its event announcement. “The APF will provide educational materials for their physicians and other medical professionals, as well as the public for patient driven awareness and fund raising activities.”
This year also marks the 40th birthday of the APF, which has around 15,000 members. To celebrate, patients, their families, and caregivers are asked to go live on Facebook on Saturday with stories about their porphyria journey. They’re also encouraged to light a birthday candle, take a photograph or record a video of the activity, and send it to the APF.
A patient meeting also will be held 6 p.m. CST Saturday at 6 Mistflower Lane, Santa Rosa Beach, Florida, where all attendees will receive a birthday gift.
In addition, there will be a Zoom watch party for the video “Two of Me,” an Alnylam Pharmaceuticals production that tells the stories of seven people around the world who are living with acute hepatic porphyria.
On Monday, the APF will present a “Let’s Talk Porphyria” Zoom event at 6 p.m. EST with Nicole Castellano, who has acute intermittent porphyria. Stay tuned for more details, which will be posted on APF’s Facebook and website.
On April 4,“hat day” for the week, supporters are encouraged to don lids in honor of photosensitive porphyria patients, share photos on social media, and possibly win a prize. Patients with cutaneous porphyrias are commonly sensitive to sunlight, which can result in symptoms including redness and skin blisters, and wear hats for protection.
For April 5, participants are asked to participate in the “Pet Parade,” which will feature pets of all kinds and photos of the animals can be posted on Facebook. The organization will be awarding prizes for this activity as well.
The following day, all are encouraged to share on social media what they’re doing to increase porphyria awareness in their community. On April 7, supporters can vie for top prize for the best posted “tip top tip” to help patients with any type of porphyria.
And April 8, participants are asked to sport purple garb and post photos of them doing so on their social media platforms. More prizes will be awarded.
Also April 8, the APF will host the first office livestream video game from 7-8:30 p.m. with organization member Sean Albright. Gamers can watch Albright play Gran Turismo 7 by searching APF Live Streaming Channel or by going to Twitch here.
Another GPAC member organization, the United Porphyrias Association, is offering supporters the GPAC toolkit, as well as posts for Facebook, Instagram, Twitter, and LinkedIn. It is also providing a printable poster, event “one-sheeter,” a #PurpleForPorphyria card, and a sign for social media selfies and photos. In addition, the association is encouraging participants to host a screening of the “Two of Me” documentary and use the provided discussion guide.
“Porphyria Awareness Week is an opportunity to raise awareness to patients, healthcare professionals, and the general public about the impact of porphyria!” the organization states on its PAW announcement webpage. The organization’s activities are supported by Mitsubishi Tanabe Pharma America.
Activities are scheduled internationally as well. The British Porphyria Association, also a GPAC member, is observing the week by producing a collage of the porphyria experience and by asking supporters to “wear purple for porphyria” and to tell 15 people about the disorder. As part of the #Tell15 effort, participants are also invited to host a viewing of documentaries on erythropoietic protoporphyria or acute porphyria.
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