• Sunday, April 11, 2021

Schedule for Today - Sunday April 11

FOCUS ON CONGENITAL ERYTHROPOIETIC PORPHYRIA (CEP) 

and ALAD-DEFICIENCY PORPHYRIA (ADP)

 

CEP Member Spotlight - Adeline Tonhaeuser

Read About Adeline's Porphyria Story

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Congenital Erythropoietic Porphyria (CEP) 

Congenital Erythropoietic Porphyria (CEP) is a very rare inherited metabolic disorder resulting from the deficient function of the enzyme uroporphyrinogen lll cosynthase (UROS), the fourth enzyme in the heme biosynthetic pathway.  

ADP Member Spotlight - Milton Cubas

Read About Milton's Porphyria Story

 

ALAD-Deficiency Porphyria (ADP) 

ALAD Deficiency Porphyria (ADP) is rare and is characterized by almost complete deficiency of the enzyme delta-aminolevulinic acid (ALA) dehydratase. ADP is more severe than the other acute Porphyrias and can present in childhood. Only ~10 cases have been reported worldwide. 

Click Here to Read More CEP Member Stories ?

Light Bulbs for CEP Members

Thanks to donations from our members and the National Lighting Bureau, the APF has a generous supply of incandescent light bulbs to distribute to members.

 

Should you wish to receive a supply of bulbs via mail, please email: info@porphyriafoundation.org with your name and mailing address. (Sorry, we can only ship to the US & Canada).

Coming tomorrow...

?Join Nicole Castellano on Zoom

 

Join us tonight for a Zoom Session hosted and moderated by APF Member, Nicole Castellano, to build a dialogue among individuals with similar stories #LETSTALKPORPHYRIA.

This campaign encourages our community members to educate and partake in a dialogue with their peers and healthcare professionals about Porphyria.

 

How will you get the discussion started?

Zoom information listed below:

Time: 8:00 PM eastern time

Join Zoom Meeting

https://zoom.us/j/2233118000

and...

Check out the Lifetime Series "Behind the Mystery" 

 

Mark your calendars we’re going “Behind the Mystery” of Acute Hepatic Porphyria (AHP)! During International Porphyria Awareness Week, be sure to tune in to The Balancing Act airing on Lifetime TV on Monday, April 12 at 7:30 a.m. ET/PT to watch an Alnylam-sponsored segment of “Behind the Mystery” focused on AHP. Hear from Nicole, a woman living with AHP, as well as Dr. Angelika Erwin, a porphyria expert, as they provide an inside look at this rare, genetic disease.

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Coming up...

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MAKE SURE YOU HEAD TO FACEBOOK AT 6:00 EST/3:00 PST/4:00 CST

?#AskDrWangAboutPorphyria

 

Facebook Live with Porphyria Expert, Dr. Bruce Wang

Dr. Wang, UCSF, San will answer your questions during a Facebook Live event Wednesday April 14 at 6:00 PM - EST. Please make sure that you are following the APF FB Page.

 

Please send us any questions that you would like answered by Dr. Wang. We will be accepting questions at: info@porphyriafoundation.org until 4:30 PM EST on Wednesday.

Shop 

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Hurry - supplies are going fast! Porphyria Awareness Week Merchandise for sale on the APF store.  

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APF STORE LINK

SEND US YOUR PHOTOS AND STORIES FOR A

SATURDAY #PorphyriaAwarenessWeek ROUND-UP

 

Purple shirt? Purple Hair? Purple Nails? Furry friends?

An interesting conversation?

 

 

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