Thursday, March 14, 2019

Porphyria Post

Porphyria Post
FDA Announces Interim Commissioner
On Tuesday, the Food and Drug Administration announced that Dr. Ned Sharpless will step in as acting Commissioner following the resignation of Dr. Scott Gottlieb last week.
Sharpless is an accomplished researcher, oncologist and administrator. He was named director of the National Cancer Institute in October of 2017 following his position as director of the University of North Carolina Lineberger Comprehensive Cancer Center.
Alex M. Azar III, secretary of health and human services, stated that this position is temporary and the FDA is continuing their search for a permanent commissioner.
ATTENTION ALL SHADOW JUMPERS!!
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applications are due in just 2 days!!
Don't miss this opportunity for a trip to Disney for your family!!
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URGENT! URGENT! PAIN COMMENTS NEEDED ASAP!!!
Do you experience pain due to Acute Porphyria? Please take 5 minutes to submit a comment TODAY to help the federal government develop official guidelines.
A government task force is addressing how to manage pain in the face of the opioid crisis. Their recommendations will become the guidelines for all government agencies.
The American Porphyria Foundation has been very involved in this committee.
Now it is your turn to make public comment. It doesn’t need to be long or perfect. Time is of the essence.
Your comment should include:
- Your diagnosis
Sample: I was diagnosed with Acute Intermittent Porphyria fifteen years ago at the age of twenty-six.
- Description of your pain
Sample: “worst pain in humankind,” “torture,” “feels like a thousand flaming swords,” “inhumane,” “feels like coals burning in my abdomen,” etc.
- Unsafe drugs trigger an Acute Porphyria attack
Sample: Acute Intermittent Porphyria is a pharmacogenetic disease. If I take an unsafe drug, it will cause an attack which includes extreme pain.
- That opioids are the ONLY safe drug that helps to manage the severe pain of acute porphyria.
Sample: My physician has prescribed and managed safe opioid use for my disease for 10 years.
- Any personal details you would like to share
Sample: I have been called a drug-seeker for requesting opioid pain management even with a diagnosis. I have been sent away from emergency rooms and hospitals.
Porphyria Awareness Week - April 6-13, 2019
Porphyria Awareness Week 2019 is less than a month away and we want to hear what YOU are doing in your community to spread the word!
Jason Sumney (AIP) is raising awareness for Porphyria and the APF at the Pittsburgh Vintage Mixer on April 6th, 2019. Megan Dunn- Tonhaeuser and her children are purchasing wristbands and handing our Porphyria Fact Sheets at their school.
The opportunities are limitless so email porphyrus@porphyriafoundation.com and let us know what you have planned for PAW 2019!
Acute Porphyria members...Your help is needed!
Attention All Acute Patients!!
Have you had trouble getting PANHEMATIN in a hospital for ANY REASON - please contact the APF on 866-APF-3635 or email porphyrus@porphyriafoundation.org.
We need to hear your story. The APF is gathering your patient stories to prove that this is an issue across the US and to advocate for access to treatment on a federal level.
Volunteers Needed!
The APF will be exhibiting at the 2019 ACMG Annual Meeting in Seattle, WA April 3-5 AND Digestive Disease Week in San Diego, CA May 19-21. Are you local to the area and 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.
RSVP Today
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!
I'll be there!
Maybe
I can't make it
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!
I'll be there!
Maybe
I can't make it
Patient Education and Support Meeting- Boston
LOCATION
Morrill Memorial Library
DATE AND TIME
04/06/19 2:00pm - 04/06/19 4:00pm
33 Walpole Street | Norwood, MA | Room: Simoni | Family and friends are welcome to attend!
I'll be there!
Maybe
I can't make it
Get Involved
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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 porphyrus@porphyriafoundation.com
American Porphyria Foundation| 1.866.APF.3635 | porphyriafoundation.org
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"Remember....Research is the Key to Your Cure!"

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