• Tuesday, April 13, 2021

Schedule for Today - Tuesday April 13

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FOCUS ON ERYTHROPOIETIC PROTOPORPHYRIA (EEP) 

X-LINKED PROTOPORHYRIA

SHADOW JUMPER CHALLENGE

EPP Member Spotlight - Morgan McKillop

Read About Morgan's Porphyria Story

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Erythropoietic Protoporphyria (EPP)

Erythropoietic Protoporphyria (EPP) is a rare inherited metabolic disorder characterized by a deficiency of the enzyme ferrochelatase (FECH). When EPP is due to an ALAS2 mutation it is termed X-linked protoporphyria (XLP), because that gene is found on the X chromosome. 

XLP Spotlight on Zach B.

Read About Zach's Porphyria Story

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X-Linked Protoporphyria (XLP) 

Erythropoietic Protoporphyria (EPP) is a rare inherited metabolic disorder characterized by a deficiency of the enzyme ferrochelatase (FECH). When EPP is due to an ALAS2 mutation it is termed X-linked protoporphyria (XLP), because that gene is found on the X chromosome. 

Click Here to Read More EPP & XLP Member Stories ?

SHADOW JUMPER CHALLENGE

 

 

Join us in the Shadow Jumper Challenge in support of Porphyria Awareness Week and those affected with EPP/XLP!

 

Challenge a friend, family member or colleague to avoid the sun COMPLETELY for just one minute, one hour, or even the entire day!

 

Post your photos on social media using the hashtag #ShadowJumperChallenge and Send your photos to us at info@porphyriafoundation.org 

Find Your Shadow 2021

We are looking for kids under the age of 18 who are attempting to do something they have always wanted to try but may have been holding off attempting because of their EPP. Whether that is attempting recess, an outdoor sport/camp, a specific family vacation and more, nothing is off limits.

 

We ask EPP families to submit their story and tell us how we can help make your dealings with EPP easier. Go to SHADOW JUMPERS on the APF website for more details. 

 

Applications are open now until Friday April 30, 2021 and recipients will be announced during the month of May!   

 

FIND YOUR SHADOW 2021 APPLICATION

Coming tomorrow...

 

Focus on AIP

 

 

MAKE SURE YOU HEAD TO FACEBOOK AT 6:00 EST/3:00 PST/5:00 CST

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#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?

 

Send your pictures and/or stories to info@porphyriafoundation.org

#LETSTALKPORPHYRIA encourages you to educate your local community and healthcare professionals through encouraging a conversation about Porphyria and the impact it has on you. One conversation can make a difference.

 

Have you had a good conversation about Porphyria? Share with us at: info@porphyriafoundation.org or edrinw@porphyriafoundation.org

 

 

Please Click Here to Access the APF Webpage for Awareness Week Logos and Materials

 

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Contact Information

 

Is your contact information up to date?

If not please give us a call @

866-APF-3635 or Email to info@porphyriafoundation.org

 

American Porphyria Foundation| 1.866.APF.3635 | porphyriafoundation.org

"Remember....Research is the Key to Your Cure!"

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