APF members and volunteers are at the center of the American Porphyria Foundation’s mission. You are our reason for being, and you make our work possible. Volunteers play an essential role in advancing the APF's work.  Here are some of the ways you can get involved. We always welcome new ideas – give us a call!

Host a Patient Education Meeting

Hosting a Patient Education and Support Meeting in your local community is a valuable opportunity to bring patients, caregivers and supporters together to share common issues and to learn more about porphyria from an expert. Discussions often include medical explanations, information about current and emerging treatments, and an extended time for Q&A to answer specific questions. Bringing together a group facing similar issues in a social atmosphere is a meaningful and educational way to help individuals understand that they are not alone. We are here to help you coordinate your efforts

To host a meeting, we encourage you to use a venue that is free of charge (i.e. home, church, community center). Meeting attendance can range from 5 -50 people, depending on the concentration of members in your area.  Each meeting, no matter the number in attendance, is a success.

The American Porphyria Foundation will:

  • Send out invitations to your state and surrounding areas
  • Manage RSVP List
  • Secure a Porphyria Expert or member of the Porphyria Research Consortium to speak
  • Depending on location – speaker on site, phone or Skype
  • Provide educational materials and a PorphyriaLive DVD

Submit the information below to be contacted about hosting a meeting in your community.  Please allow us a minimum 2 months’ notice to organize a successful event.

Send your information here or contact the APF on general@porphyriafoundation.org or 1-866-APF-3635.

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In Touch Volunteer Program

If porphyria has touched your life and you’d like to share with others who have also been touched by the disease, we’d love to hear from you! The two main qualifications you’ll need are generosity of spirit, and a compassionate heart. There are two types of APF In Touch volunteers:

  • In Touch/Area volunteer agrees to be available by phone or e-mail to others who are looking for friendship and support, and who wish to network with individuals in their own town or region.
  • In Touch/Porphyria Type volunteer is a member who makes her or himself available to others with the same type of porphyria, regardless of location.

In Touch Volunteers are very important. Because porphyria is so rare, the In Touch network provides many porphyria patients with their first opportunity to speak with another person who has the disease — this is a key reason many of our members join the APF. In Touch Volunteers can expect tremendous gratitude, while finding the chance to build new and lasting friendships.

Tradeshow/Conference Exhibit Volunteer

Help educate doctors about proper diagnostic testing and treatment by staffing the APF exhibit booth when medical conferences are held in your area. Greet conference attendees as they pass by, offer APF brochures and resources as a way of promoting awareness about porphyria in the medical community. Medical organizations hold their conferences in different parts of the country each year, so if you live in or near a major city there’s a good chance you’ll be able to help out at a conference! Please contact the APF office for more information.

You can also host a table or speak at your local hospital to educate physicians on Porphyria. Many facilities offer a “lunch and learn” program. The APF will train you so you are prepared for any situation.

Local Publicity Volunteer

Raise awareness! Local volunteers can be very effective in arranging articles and television segments about porphyria in the media in their area. Call us at the office to find out more. We will offer tips to get the most out of a media opportunity. Please see our comprehensive list of media that the APF has been involved in.