Spread the Word!

Porphyria Awareness Week will be held on April 21-28, 2018. We strive to dedicate this week to promote this group of rare diseases, reduce the stigma associated with porphyria through physician education, and provide support for those affected.

National Porphyria Awareness Week is the time for you to bring porphyria awareness to your local communities. We, at the American Porphyria Foundation, encourage You to help raise awareness and provide accurate information about porphyria where you live. The APF will help you accomplish your own activity by providing:

  • Porphyria Brochures
  • Porphyria Fact Sheets
  • PorphyriaLive DVDs
  • Information to gain media attention
  • PowerPoint presentations,
  • Press releases for local newspapers and television and Much More!

Contact Edrin at the APF office today to request information to be sent to you!

1.866.APF.3635 or email: edrinw@porphyriafoundation.org

 

Patient Education and Support Meetings!          

Are you interested in hosting a Patient Education and Support Meeting? This is a valuable opportunity to bring patients, caregivers and supporters together to share common issues and to learn more about porphyria from an expert. The APF would like to help you coordinate your efforts. Please click on the link below, fill out the form attached and send it back to Edrin Williams via email at edrinw@porphyriafoundation.org or by mail to the APF office and someone will be in touch to map out the details of your meeting. We look forward to hearing from you!

Patient Education and Support Meeting

 

Porphyria Pain Project 

With the recent crackdown on opioids for pain, many patients have been put in the terrible position of having their pain meds monitored to the extent that they cannot access them timely. As states have tightened their requirement regarding pain medication, porphyria patients are paying a terrible price for the misuse of other people. For example, chain CVS Health announced that it will limit opioid prescriptions in an effort to combat the epidemic. They said they will limit initial opioid prescriptions to seven-day supplies for new patients facing acute ailments. Although this may appear good for one group of people, it is devastating for those people with porphyria who are suffering attacks or chronic pain. The APF has undertaken this enormous project—advancing awareness and understanding of porphyria pain among physicians and among state medical boards, state health departments and the CDC. This is the most important issue that has faced our patients in many years. Preeminent pain expert and internationally recognized neuro-oncologist, Dr. Kathleen Foley, is passionate about her work as a pioneer in the battle to avert needless pain and suffering and management of acute pain during the treatment process. Dr. Foley is recognized worldwide for her extraordinary pain relief work and her focus that governments must not limit a physician from treating real pain. The APF will be using much of her research and educational materials in the development of our Porphyria Pain Project For Physicians and state health departments. She and other pain experts have addressed the issue that drug abuse has hindered the need of people who are suffering badly both physically and emotionally. The APF will be distributing pain materials for physicians and hospitals, contacting state and national Health Departments, advancing awareness of porphyria pain at medical meetings and conventions and other national efforts. Please help by sending your story of your pain management being taken from you in whole or part. We will only use your initials and not your full name.

Please send your stories to Desiree at lyonapf@aol.com , Kristen at kristen@porphyriafoundation.org or to Edrin at edrinw@porphyriafoundation.org