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Porphyria Post


Porphyria Post


Mark Your Calendar!
This year's PORPHYRIA AWARENESS WEEK will be
April 6-13, 2019. This is a chance for YOU to promote porphyria awareness and education within your community!!!

The APF will be providing tools for you to help you engage your community but we need YOU to participate and spread the word about porphyria. Stay tuned for more updates on this exciting week!

Have ideas for activities? Contact the APF at 866-APF-3635 or porphyrus@porphyriafoundation.com and we would love to support you!


Demand Estimation Study

Attention Acute Porphyria members...Your help is needed!

A global research company is initiating an online survey to get a deeper understanding of patients’ experiences living with acute porhyria as well as understand how well a hypothetical new treatment would meet their needs. The study can be taken on a laptop or desktop computer and will take approximately 30 minutes to complete.
Participants will be screened to ensure they meet the criteria listed below, and those who complete the survey will receive a stipend. 

Criteria:
1.   Are 18 years of age or older
2.   Have been diagnosed with Acute Hepatic Porphyria (specific types include Acute Intermittent Porphyria, Variegate Porphyria, Hereditary Coproporphyria).
3.    Own and are comfortable using a laptop or a desktop computer
4.  Have internet access

Please call the APF at 866-APF-3635 participate in the survey.  


Volunteers Needed!

The APF will be exhibiting at the 2019 ACMG Annual Meeting in Seattle, WA April 3-5. Are you interested in volunteering at our booth? If so, please contact Edrin Williams, Director of Patient Services, for additional information at edrinw@porphyriafoundation.org or 301.347.7166.

This is an incredible opportunity to raise awareness about porphyria to those with little knowledge about this rare disease.


Attention Shadow Jumpers

Shadow Jumpers, a graphic novel written by Shruti Shenbagam, Hetanshi Naik, and Dr. Manisha Balwani and illustrated by Tina Chu, is now available on the APF store for $15.

This book is designed specifically to educate children with EPP and their families in a way that everyone will understand and enjoy.

Get ready for FIND YOUR SHADOW 2019! Visit the APF Website for this year's application!

Once again this year, the Shadow Jumpers program will be selecting one family for an all-expenses paid trip to Walt Disney World in Orlando, FL. All children ages 5-17 and their families are eligible to apply. Shadow Jumpers is dedicated to finding creative ways to help kids and their families to take on a safe adventure. 

In 2018, the Stuhlsatz family was selected for Light the Moment 2018, the theme of last year's trip. Their trip - from beginning to end - was "a once in a lifetime experience!"
Shadow Jumpers is excited for your submissions to FIND YOUR SHADOW 2019! 

*please note: Shadow Jumpers is funded through donations and charitable contributions separate from the APF.



RSVP Today

Patient Education and Support Meeting- Phoenix

LOCATION
Holiday Inn & Suites Phoenix Airport
DATE AND TIME
02/23/19 1:00pm - 02/23/19 3:00pm
3220 S. 48th Street | Phoenix, AZ | Room: Scottsdale | Family and friends are welcome to attend!



Patient Education and Support Meeting- Ann Arbor

LOCATION
Holiday Inn
DATE AND TIME
03/16/19 1:00pm - 03/16/19 3:00pm
3600 Plymouth Road | Ann Arbor, MI | Room: Wolverine A | Family and friends are welcome to attend!



Patient Education and Support Meeting- Seattle

LOCATION
Seattle Public Library- Central
DATE AND TIME
04/04/19 5:30pm - 04/04/19 7:30pm
1000 Fourth Avenue| Seattle, WA | Room: Washington Mutual | Level: 4 | Family and friends are welcome to attend!





Get Involved



Contact Information

Is your contact information up to date?
If not please give us a call @ 866-APF-3635 or Email to porphyrus@porphyriafoundation.com

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

STAY CONNECTED

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

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