GlobalPorphyria

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GlobalPorphyria

GlobalPorphyria

@GlobalPorphyria

Global Porphyria Advocacy Coalition (GPAC) Representing and connecting patient advocacy groups for all the porphyrias, all around the world 🌏

Registered in UK Katılım Mart 2023
27 Takip Edilen35 Takipçiler
GlobalPorphyria
GlobalPorphyria@GlobalPorphyria·
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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GlobalPorphyria
GlobalPorphyria@GlobalPorphyria·
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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Tanabe Pharma America
Tanabe Pharma America@TanabePharmaUS·
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.
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Tanabe Pharma America
Tanabe Pharma America@TanabePharmaUS·
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.
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GlobalPorphyria
GlobalPorphyria@GlobalPorphyria·
"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
BridgeBio Pharma@BridgeBioPharma

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

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Stratenym
Stratenym@stratenym·
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
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United Porphyrias Association
United Porphyrias Association@UnitedPorphAssc·
GLOBAL PORPHYRIA DAY IS MAY 18 - United Porphyrias Aims to Raise Awareness, Research and Support for Rare Disease prn.to/3yhgvl1
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Disc Medicine
Disc Medicine@DiscMedicine·
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
GlobalPorphyria@GlobalPorphyria

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=btNNYv…

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Keşfet

@RAREis @Amgen @burnavontheatre @hilloftheoneill @BPA_Porphyria @UnitedPorphAssc @Alnylam @elonmusk