Top Tweets for #SpotlightPorphyria
@MidUlster_DC @burnavontheatre @hilloftheoneill Thank you @MidUlster_DC for supporting #Globalporphyriaday
And #spotlightporphyria
Hopefully people will share some pictures later...
Great work @rarerevolutionmagazine in placing a #SpotlightPorphyria on this #takeovertuesday in advance of #globalporphyriaday -18thMay!
Learn more about porphyria and it's effects @BPA_Porphyria
"No matter which type, the more knowledgeable about their condition, the more likely a patient is to stay well.
We offer a helpline, peer support groups & regular events to help people with #Porphyria connect with others: https://t.co/k6hJ4s08aA 💜
#CareForRare"
@BPA_Porphyria
Thank you @rarerevolutionmagazine for this #TakeoverTuesday to #SpotlightPorphyria!
It's #GlobalPorphyriaDay on 18thMay!
Follow us and @globalporphyria as more videos are released this week from patients around the world, bravely sharing their #myporphyria stories!
"What’s it really like to have porphyria?
Medical terms are only part of the story. Hear stories from #Porphyria patients around the world, in their own words: https://t.co/gHo2Wbco8E
Learn more at https://t.co/kwdW7yJtxi🌍
#TuesdayTakeover #MyPorphyria"
@BPA_Porphyria
In 2024, we are planning a series of awareness & fundraising activities on the themes of #PurpleForPorphyria & #SpotlightPorphyria – and we need your help!
Visit our website for fundraising ideas & information on how to get involved: https://t.co/CXnlfR20x8 💜
@GlobalPorphyria
As #PorphyriaAwarenessWeek comes to an end, we hope that our posts were helpful in dispelling some of the common misconceptions around porphyrias.
#PorphyriaAwarenessWeek2023 #PAW2023 #SpotlightPorphyria #porphyria #raredisease #erythropoieticprotoporphyria
Phototoxicity occurs when light interacts with a phototoxic substance, which then becomes toxic due to molecular changes produced when the substance absorbs light.
#science #photomedicine #light #biology #porphyria #PorphyriaAwarenessWeek2023 #PAW2023 #SpotlightPorphyria
Last day so please click! We have partnered with @RecordatiRareUS to raise awareness of #Porphyria.
CLICK THIS LINK ➡️ https://t.co/3AepQXcU2d, and Recordati Rare Diseases will donate $5 (up to $5K) for every click. Let’s Fight Porphyria Together! #SpotlightPorphyria #PAW2023
Phototoxic reactions in EPP can cause visible dermal symptoms (swelling and redness), and some of the world’s leading EPP experts are dermatologists, but the underlying cause of EPP is complex.
#SpotlightPorphyria #PorphyriaWarriors #Porphyria
This week is Porphyria Awareness Week. Our friends at the American Porphyria Foundation (@Porphyria_Help) invite you to join in as they #SpotlightPorphyria with different activities each day. https://t.co/fzvEqiUYuw
Allergies tend to arise from the body’s immune response to an allergen. In EPP patients, however, their phototoxic reactions result from the deficiency of the ferrochelatase (FECH) enzyme.
#SpotlightPorphyria #Porphyria #raredisease
What are some misconceptions on porphyrias that you wish you can clarify? Tweet us your experience(s)!
#PorphyriaAwarenessWeek2023 #PAW2023 #SpotlightPorphyria #misconceptions #raredisease #porphyria #erythropoieticprotoporphyria #EPP
Stick around with us this #PorphyriaAwarenessWeek2023, as we shine a spotlight on the common misconceptions around porphyrias.
#SpotlightPorphyria #PAW2023
Today at 1pm ET - Spotlight on Acute Porphyrias featuring Porphyria Expert Dr. Roy E. Smith w/ Q&A. AHP patients will also present. Please email [email protected] to register #PAW2023 #SpotlightPorphyria #porphyria #PorphyriaAwarenessWeek #porphyriawarriors
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