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.

In Touch Volunteer

If porphyria has touched your life and you’d like to share with others who have 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:

  • An area In Touch 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.
  • A Porphyria Type In Touch 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 as well.

Fundraiser or Special Event Volunteer

Thanks to the efforts of our fund-raising volunteers, revenue generated through special events fundraising helps the APF link members through the In Touch network, fund research, and educate physicians, patients and the general public about porphyria. There are many creative ways to raise money, and we can guide you in designing a fundraiser that will be easy for you to run. Some people enjoy hosting community events like a run or a raffle. Others prefer neighborhood events like a spaghetti dinner or bake sale.

Many of our members have written a letter to their family, friends, co-workers or religious community to let them know how the APF has helped them and asking recipients to give to the APF. Doing this will help educate others about a condition that has deeply affected your life, and help other porphyria patients at the same time.

Many families have had success asking people to donate in honor of a birthday, or in memory or honor of someone special to them.

Be sure to let people you write to know:
1) What you are asking them to do and why;
2) What porphyria has meant to you;
3) How the APF has affected your life; and
4) How to donate.

Before you begin planning a fundraiser, please contact us at the APF office (866-APF-3635 or 713-266-9617). Remember, we are here to help you meet your fundraising goals. We can help you brainstorm, provide suggestions and put you in touch with others who have organized similar events. Thank you for your help, and happy fundraising!

Medical Exhibit Booth Volunteer

Help educate doctors about proper diagnostic testing and treatment by staffing the APF exhibit booth when medical conferences are held in your city. Greet conference attendees as they pass by, offer APF brochures and resources as a way of promoting awareness of porphyria in the medical community. (Note: 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 some day.)

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.