American Porphyria Foundation

Educating, advocating, connecting patients & supporting research for the prevention, treatment & cure of #porphyria #PorphyriaStrong 💜 #porphyriawarriors

[American Porphyria Foundation @Porphyria_Help]

NEW SHIRTS AVAILABLE!! V-necks, long & short sleeves & tons of colors! Visit: https://t.co/dUexFQnBLa

Creative design by APF member Andrew McManamon @andrewmcmanamon
#porphyria #americanporphyriafoundation #porphyriaitsinmyblood #apfstore #porphyriaapparel #porphyriafoundation

[American Porphyria Foundation @Porphyria_Help]

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 [email protected] to join.
#Porphyria #MoreThanPorphyria #PorphyriaStrong #BookClub #ReadBooks

[American Porphyria Foundation @Porphyria_Help]

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 [email protected] #porfiriajuntos

[American Porphyria Foundation @Porphyria_Help]

@RealJamesWoods Very interesting post! Porphyria can cause temporary episodes that mimic mental illness, but it does not necessarily cause mental illness. Please see this link: https://t.co/GS7KAE3pWu.

[American Porphyria Foundation @Porphyria_Help]

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

[American Porphyria Foundation @Porphyria_Help]

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

[American Porphyria Foundation @Porphyria_Help]

@BPA_Porphyria @RecordatiD @rarediseaseuk @GeneticAll_UK @GenePeopleUK @M4RareDiseases @porphyria_news @BritishDermDocs @Alnylam @DiscMedicine @ClinuvelNews How fun!

[American Porphyria Foundation @Porphyria_Help]

@RecordatiRareUS @RecordatiRareUS Focusing on the few saves lives. Thank you for all you do!

[American Porphyria Foundation @Porphyria_Help]

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 [email protected].

[American Porphyria Foundation @Porphyria_Help]

@mamakatie64 @pulte Thank you for your support Katie!!! 💜

[American Porphyria Foundation @Porphyria_Help]

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

[American Porphyria Foundation @Porphyria_Help]

@RRD_Foundation @ESEndocrinology @Metab_ERN @ENEAssoc @Orphanet Thank you for all you do for Porphyria patients around the world!

[American Porphyria Foundation @Porphyria_Help]

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 https://t.co/IACvKSxpZ2
Next Click on APF Store

[American Porphyria Foundation @Porphyria_Help]

EPP & XLP PATIENT MEETING
Free to attend!

[American Porphyria Foundation @Porphyria_Help]

If you need assistance with Porphyria please contact the APF today. Receive a free patient & Dr. Packet by email. Reply to [email protected]

[American Porphyria Foundation @Porphyria_Help]

Please friends, give someone in the Porphyria community a donation today. https://t.co/qLW99USCz3

[American Porphyria Foundation @Porphyria_Help]

Holiday Announcement-https://t.co/Cyuw1NZmYj

[American Porphyria Foundation @Porphyria_Help]

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. https://t.co/a0pgGbCaJp

[American Porphyria Foundation @Porphyria_Help]

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 https://t.co/213GHj1tgO

[American Porphyria Foundation @Porphyria_Help]

If you need a patient or physician packet emailed to you for free please message us. Were happy to assist you