American Porphyria Foundation
@Porphyria_Help
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Educating, advocating, connecting patients & supporting research for the prevention, treatment & cure of #porphyria #PorphyriaStrong 💜 #porphyriawarriors
Bradenton, FL USA
Joined April 2009
NEW SHIRTS AVAILABLE!! V-necks, long & short sleeves & tons of colors! Visit: Creative design by APF member Andrew McManamon @andrewmcmanamon.#porphyria #americanporphyriafoundation #porphyriaitsinmyblood #apfstore #porphyriaapparel #porphyriafoundation
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Calling all book lovers! You're invited to join a new APF book club starting August 8th. Connect monthly with other members & forget about porphyria for a while. Email general@porphyriafoundation.org to join. #Porphyria #MoreThanPorphyria #PorphyriaStrong #BookClub #ReadBooks
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La APF con @porfiria_org , SMP, @eileenhudson , @Fundacionporfir , Costa Rica Porfiria y Argentina Centro de Porfiria les invitan a un Zoom con el experto @genesmd con preguntas y respuestas. Para registrarse, contacte a deborah@porphyriafoundation.org #porfiriajuntos
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Last day so please click! We have partnered with @RecordatiRareUS to raise awareness of #Porphyria. CLICK THIS LINK ➡️ and Recordati Rare Diseases will donate $5 (up to $5K) for every click. Let’s Fight Porphyria Together! #SpotlightPorphyria #PAW2023
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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 deborah@porphyriafoundation.org to register #PAW2023 #SpotlightPorphyria #porphyria #PorphyriaAwarenessWeek #porphyriawarriors
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With @PorphyriaCanada announcing EPP Patient Day Virtual Event! Presentation by Porphyria Expert Dr. Karl Saardi of @GW_MFA w/ Q&A, children & adults share & a MAJOR announcement for EPP Patients - Don't miss this event! Comment below or contact deborah@porphyriafoundation.org.
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Today is Rare Disease Day across the globe!! DARE TO SHOW YOUR RARE! We put Patients First and have dedicated ourselves to Rare Disease and Porphyria for over 40 years!💜 We are not so rare together and we are here for you everyday! #apf #rarediseaseday #porphyria #purplepain
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Exciting News! . The APF store is now open fun new shirts, necklaces, and more goodies get your today either order by phone or by custom ink link. Go to Next Click on APF Store.
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EPP & XLP PATIENT MEETING .Free to attend!
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If you need assistance with Porphyria please contact the APF today. Receive a free patient & Dr. Packet by email. Reply to general@porphyriafoundation.org
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Please friends, give someone in the Porphyria community a donation today.
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Please take a moment on Giving Tuesday to give to the APF. You are the ones that keep us moving in education & research for the Porphyrias.
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Medical Moment- Ferritin: a protein present in the liver, which binds and stores iron. A small amount of ferritin (serum ferritin) circulates freely in the blood, where it may be measured. To learn more click
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If you need a patient or physician packet emailed to you for free please message us. Were happy to assist you.
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Call the APF first with any questions you may have. Important to get accurate information. 1.866.APF.3635 Just world wide Opportunity to share your experience with AHP.
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RT @AssistanceFund: UPDATE: An email went out today with 2023 Reenrollment directions, including options to apply for Reenrollment by text,….
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Are immunizations/vaccinations safe for people with acute porphyria? We therefore recommend that patients with acute porphyria receive necessary vaccinations, in accordance with established guidelines, under physician recommendation.
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The APF Supports & Helps those needing assistance!.Call the APF 1.866.APF.3635 or message us on FB support groups. #patientscomefirst #patienteducation #support #raredisease #APF
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