Skip to main content

It's National Porphyria Awareness Week!


Look at what's going on! 
It's National Porphyria Awareness Week!
We have been getting submissions on what people are doing to RAISE PORPHYRIA AWARENESS! See their efforts below!
Jared Ulmer (Porphyria J) was contacted by a student named Ashly from Whitehall High School in Mechanicsville, PA to share his story with Ashly's honors genetics class! Way to go Ashly!
Here is the link: https://youtu.be/q_TjJn3o584 

John Krause chose to share his story on social media to raise porphyria awareness!

Here are some photos from people raising porphyria awareness!

Justin Hamilton created a Pic Collage to raise CEP Awareness!



Cassie Tucker and her son Mitchell created a T-shirt campaign to raise awareness for EPP! Cassie donated a portion of the proceeds to the APF! Thank you, Cassie and Mitchell!


   
Kristen Wheeden and her son Brady (EPP) wearing APF gear in support of NPAW!



Terri Witter wearing APF gear in support of NPAW!



Tammy Smith wearing APF gear in support of NPAW!



 Lina Rebeiz wearing APF gear in support of NPAW!



Lakeshia Johnson painted her nails purple in support of NPAW!


WOW! Thank you all for your continuing support in our National Porphyria Awareness Week efforts.  You can use anything in life to promote awareness!
Think about what you can do to heighten awareness! It's not too late!

National Porphyria Awareness Week provides each of YOU with the opportunity to enhance porphyria awareness in your local and medical communities.  
The APF can help you accomplish this goal by providing materials:
Porphyria Brochures
Porphyria Live DVD
Fact sheets
A PowerPoint Presentation
Information for Grand Rounds
Ideas to set up Medical Seminars
Ideas to exhibit at a Health Fair
Information to gain press
Doctor packets sent to your doctors
Press Releases
Contact the APF TODAY at 1.866.APF.3635 or 713.266.9617

"Remember....Research is the key to your cure!"

Comments

Popular posts from this blog

Amazing patient advocacy....and needed media for this issue. Thank you Terri Witter!

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…