Thursday, January 24, 2019
Share your story! We want to hear from you…
In preparation for Porphyria Awareness Week (April 6-13), the American Porphyria Foundation invites you to share your story with the porphyria community. With permission, all stories will be featured on the APF Website. We will also feature select stories in our quarterly newsletter.
Stories should be about 500 – 2000 words and full of your personality. Make sure to include information about your specific porphyria type, your diagnostic journey and how this disease has impacted your life.
We will be sending out a small token of our appreciation to the first 5 submissions.
We look forward to receiving your stories. The APF office hears regular feedback that the stories listed on our site have helped them feel less isolated and work toward diagnosis. Thank you for having a hand in helping others through your stories and words.
Send your stories to Edrin at firstname.lastname@example.org
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 email@example.com 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.
Panhematin Study - Participants Needed!
Do you have AIP, VP or HCP? Are you interested in participating in research? If so, we are recruiting volunteers for the Panhematin Study.
Our researchers need people to volunteer for the Panhematin study. Completing this study will help prevent insurance companies from not paying for this treatment.
The purpose of this study is to determine if Panhematin is safe and effective for prevention of acute attacks of porphyria.
• Can you predict when your next attack will happen?
• Are you currently receiving prophylactic heme treatment?
Please contact Edrin at the APF office (301.347.7166) if you are interested in participating.
Be a leader in Rare Disease
The EveryLife Foundation and Global Genes are partnering to bring you the RARE on the Road Tour. Learn, recognize, connect and discover within the rare disease community and spread the word about porphyria. The tour will be in Boston, MA, Birmingham, AL, Denver, CO, and Sioux Falls, SD. Visit https://raretour.org/ to learn more about this amazing opportunity!
EPP Clinical Trials: Volunteers Needed!
We are close, but we need YOU!
A clinical trial with an oral investigational drug intended to reduce phototoxicity in people living with EPP is underway.
Please note that a Phase 3 study is very unlikely if Phase 2 is not completed. To date, this drug has proven nontoxic and there have been essentially no dropouts in the Phase 2 study to date.
This is an oral drug which makes administration simple.
This study in adults will pave the way for a near-future pediatric trial. EPP is a rare disease and patients must participate in order to get the drug approved.
To date there is no public information on the availability of Scenesse, and if approved, two drugs on the market may lower their cost.
We will connect you with a Research Coordinator that will answer all your questions and concerns. We will work to make this process as easy as possible for you.
**Note: If you have not been contacted by a research coordinator please reach out to the APF office at 301.347.7166. **
• Confirmed diagnosis of EPP
• Provide written informed consent to participate
• Be willing and able to travel to all study sites for scheduled visits
• 18 - 70 years of age at the time of screening.
• Mount Sinai - New York City
• Wake Forest Baptist University - Winston Salem, NC
• University of Miami - Miami, FL
• University of Texas Medical Branch - Galveston, TX
• University of Utah - Salt Lake City, UT
• University of California San Francisco - San Francisco, CA
We need YOU! Please dig deep and consider being part of this changing moment for all with EPP.
Contact us here at the APF office to get in contact with a research coordinator.
301.347.7166 or 1.866.APF.635
"Remember...Research is the key to YOUR cure!"
Each Step Toward Finding an Effective Treatment is Important!
Harvoni Study - PCT
Do you have PCT? Are you interested in participating in research? Do you have Hepatitis C? If you answered YES to these questions, this is for you.
We need YOU for a clinical trial!
The purpose of this clinical trial is to assess whether Harvoni alone is an effective therapy in active PCT patients with Chronic Hepatitis C.
Who can participate?
1. Adult patients with PCT who also have Hepatitis C
If you are interested in participating please contact Edrin Williams, Director of Patient Services at the APF office at 301.347.7166 for additional information.
Patient Education and Support Meeting- Phoenix
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
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!
Is your contact information up to date?
If not please give us a call @ 866-APF-3635 or Email to firstname.lastname@example.org
American Porphyria Foundation| 1.866.APF.3635 | porphyriafoundation.org
"Remember....Research is the Key to Your Cure!"
February 16, 2019 Coming to a city near you!! Patient Education and Support Meetings Throughout 2019 the APF wil...
Erythropoietic Protoporphyria What is erythropoietic protoporphyria? The word ‘erythropoietic’ means associated with red blood cells (‘...
#PAW2018 This year, each day we will bring you a member story of each type, a Medical Fact on each type, Medications approved ...