Skip to main content

NEW- Porphyria POST

Porphyria Post
OFFICE CLOSURE

The APF office will be closed on Monday, February 18, 2019 in observation of President's Day. Normal hours of 9:00am-5:00pm EST will resume Tuesday, February 19, 2019.

Porphyria Awareness Week - April 6-13, 2019
Over the years this time honored tradition has inspired porphyria patients to go out and educate their community on porphyria. Over the years many great ideas have been put into action such as, in 2014 when Amanda Rich made purple bracelets for porphyria survivors or in 2015 when Victor Mejias hosted a fishing tournament for the APF. In 2018, Cassie Tucker and her son created a T-shirt campaign to raise awareness for EPP and donated part of the proceeds to the APF! This is the time to use your hobbies and talents to spread the word about porphyria. There is no limit to what you can accomplish!

What does 2019 hold? Murphy McNutt (PCT) is organizing a fundraiser for the APF at her fitness studio. She is planning a "ride" with the support of the studio owner and plans to have riders wear purple! Check out Murphy's story on the APF website Member Stories, visit https://porphyriafoundation.org/member-stories/murphy-mcnutt.

Over the next few weeks, the APF will be sharing resources and tools for you to create awareness in your community. Need ideas? Give the APF office a call on 866-APF-3635.

Let us know what YOU are planning and together let's PAINT THE WORLD PURPLE!

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.
Acute Porphyria Survey

A research company has initiated an online survey to get a deeper understanding of patients’ experiences living with acute porphyria. 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.
Participants will receive a $50 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 to participate in the survey.

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 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- 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!

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!"

Comments

Popular posts from this blog

WHAT IS NEUROPATHIC PAIN?

What could it be?
Nerve Pain WHAT IS NEUROPATHIC PAIN? Neuropathic or nerve pain (NP) is a long-term or chronic pain disease that results from nerve damage. It can be caused by different diseases or conditions. Worldwide nerve pain affects as many as 26 million people. Neuropathic or nerve pain may affect larger areas of the body or it can be restricted to a smaller area, in this case it is called localized neuropathic pain (LNP). WHAT CAUSES NEUROPATHIC PAIN? Neuropathic or nerve pain may occur in the absence of an obvious visible cause (e.g. an accident, an injury, a chemical burn). There are several external situations that can directly damage nerves and lead to neuropathic pain, such as: Amputation of a limb (phantom pain, stump pain)Surgery (scar pain, post-surgery pain)Trauma or accident Neuropathic pain is also a common complication of other diseases, including nerve damage after shingles or herpes zoster infection (postherpetic neuralgia or PHN), nerve damage after HIV infectio…

GLOBAL PORPHYRIA ALLIANCE

GLOBAL PORPHYRIA ALLIANCE The APF is proud to support our members that live across the globe. Many countries around the world have developed organizations to support their local communities. We hope that enjoy the same opportunity to communicate with one another, develop friendships, and learn about porphyria. Here are links to patient advocacy groups worldwide that offer support to individuals impacted by porphyria. Argentina: Centro de investigaciones sobre porfirinas y porfirias | More informationAustralia: Porphyria Association, Inc. | More informationBrazil: Associação Brasileira de Porfiria | More informationCanada: Canadian Association for Porphyria | More informationColombia: Fundación Colombiana Para La Porfiria | More informationDenmark: Porfyriforeningen.dk (Porphyria Association Denmark)Denmark: Porfyrier.dk (Danish Porphyria Support Group)England: British Porphyria AssociationFinland: Finnish Porphyria Support Group France: Association Française des Malades Atteints de Por…

Happy Winter Season!

                  Happy Winter Season!