Global Porphyria Advocacy Coalition (GPAC) Representing and connecting patient advocacy groups for all the porphyrias, all around the world 🌏
Registered in UK
Joined March 2023
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It’s always so wonderful to gather our global #porphyria community in person! We’re meeting to discuss how we can better advocate for and support patients around the world 🌍 to start off the International Congress of Porphyrins and Porphyrias.
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GPAC is delighted to have been selected as a 2024 #RAREis Global Advocate Grant recipient by the @RAREis program from @Amgen! THANK YOU!
Your support will enable us to continue to positively impact the global porphyria community.
Learn about #RAREisGrant: bit.ly/3Z6sfSP
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GlobalPorphyria retweeted
Tonight, we are lighting the #Mississauga Civic Centre clock tower purple for Global Porphyria Awareness Day. Learn more at porphyriacanada.ca #purpleforporphyria #porphyriacanada #globalporphyriaawarenessday #myporphyria #porphyria
ALT The Mississauga Civic Centre and clock tower lit in the colour purple surrounded by trees in the dark night sky.
GlobalPorphyria retweeted
Tonight, #Newmarket’s Fred A. Lundy Bridge will be lit purple for #GlobalPorphyriaAwarenessDay to raise awareness for this rare blood disorder. #purpleforporphyria
GlobalPorphyria retweeted
Our Council buildings @burnavontheatre, @hilloftheoneill & The Bridewell, Magherafelt will light up purple tonight, Saturday 18 May, in recognition of Porphyria Awareness Week, organised by @BPA_Porphyria. For more information on this rare condition, see: porphyria.org.uk/
GlobalPorphyria retweeted
In recognition of #GlobalPorphyriaDay this past weekend, we acknowledge the unique journey and challenges experienced by individuals affected by this rare disease. Our mission is to drive scientific discovery in support of those impacted by #porphyria.
GlobalPorphyria retweeted
For Global Porphyria Day, we heard from people with erythropoietic protoporphyria (EPP) and X-linked protoporphyria (XLP) about their condition and unmet needs. Learn more at @UnitedPorphAssc & @GlobalPorphyria and listen to their stories: bit.ly/3QQkP1g #MyPorphyria
GlobalPorphyria retweeted
Living with a #RareDisease like acute hepatic #porphyria (AHP) can be a challenging and isolating experience. Hear from Veronica to find out how she found strength in her loved ones while coping with her illness. #MyPorphyria #GPD2024
GlobalPorphyria retweeted
In anticipation of Global Porphyria Day, we're highlighting our commitment to the #porphyria community. Danielle Wall, Associate Director of Clinical Operations on our EPP team oversees our efforts in advancing research and care for those impacted by this rare disease.
GlobalPorphyria retweeted
Life for many erythropoietic protoporphyria (EPP) patients involves ‘shading jumping’ and avoiding the light at all costs. This #GlobalPorphyriaDay we’re sharing Chris’ experiences of growing up in the dark.
#PorphyriaAwareness #RareDiseaseAwareness
"It's the struggle of running errands that day, or figuring out if you'll have a reaction on your way to work" 💜
Check out this EPP #porphyria video:
bridgebio.com/wp-content/upl…
#GlobalPorphyriaDay #MyPorphyria #Porphyria
For Global Porphyria Day, we heard from people with erythropoietic protoporphyria (EPP) and X-linked protoporphyria (XLP) about their condition and unmet needs. Learn more at @UnitedPorphAssc & @GlobalPorphyria and listen to their stories: bit.ly/3QQkP1g #MyPorphyria
GlobalPorphyria retweeted
We’re wearing #PurpleForPorphyria on #GlobalPorphryiaDay as we join patients and organizations around the world to spread disease awareness and reaffirm our commitment to developing meaningful solutions for the #EPP and #XLP community. #MyPorphyria
Good morning... It’s #GlobalPorphyriaDay!
Check out this wonderful awareness collaboration with @Alnylam & @Katriparra: instagram.com/reel/C7GVwRMsk…
@Katriparra you're incredibly brave and inspiring, thank you for sharing your porphyria journey! From #paralysis to #PorphyriaWarrior!
GlobalPorphyria retweeted
It's #GlobalPorphyriaDay on Saturday, May 18. Porphyria is the name given to a group of rare metabolic disorders. Signs and symptoms vary, which is why it's so important to raise awareness about this rare disease on Global Porphyria Day. porphyria.org.uk/
#MyPorphyria
GlobalPorphyria retweeted
GLOBAL PORPHYRIA DAY IS MAY 18 - United Porphyrias Aims to Raise Awareness, Research and Support for Rare Disease prn.to/3yhgvl1
GlobalPorphyria retweeted
Thank you to the @GlobalPorphyria for spotlighting EPP and XLP patients around the world and what it’s like to live in their skin. Learn more about their stories and how you can get involved with Global #Porphyria Awareness Day tomorrow, 5/18. 💜
#MyPorphyria
From painful reactions to sunlight to long delays in diagnosis, living in the shadows is a reality when you have EPP and XLP #porphyria.
Hear from EPP and XLP patients from around the world about what it's like to live in their skin. #myporphyria
youtube.com/watch?v=btNNYvvV…
Severe pain, nausea, seizures and paralysis are just some of the bewildering array of symptoms when you live with Acute Intermittent Porphyria (AIP).
Hear what patients have to say about their #porphyria 💜
youtube.com/watch?v=10GHEWsL…
#MyPorphyria #GlobalPorphyriaDay #RareDisease
Some days with #porphyria are so hard to get through. What has helped you keeping going?
Follow us to hear more stories of patients like Gabriela and visit myporphyria.org to get your #MyPorphyria templates to share your experience.
#GlobalPorphyriaDay
What do patients have to say about #porphyria? From sudden attacks of severe pain and paralysis, sensitivity to sunlight and heat, navigating life with these rare types of porphyria, HCP and VP, can be exhausting.
youtube.com/watch?v=pr07SZT0…
#GlobalPorphyriaDay
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So excited to have @UnitedPorphAssc join Global Porphyria Day!
Global Porphyria Day is Saturday, May 18! Get ready to turn purple in support of #porphyria:
💜Encourage your friends and family to join you in wearing purple
💜Decorate or light your house in purple
💜Post your #PurpleforPorphyria so we can all see it too!
#GlobalPorphyriaDay
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