Porphyria Awareness Week April 20-26, 2014


It is time to get prepared for the upcoming National Porphyria Awareness Week!  We encourage every single one of You to help raise awareness about porphyria. We together are making a big difference in educating the public and medical professionals about the disease and helping each other to overcome the difficulties with a smile and enthusiasm.


During National Porphyria Awareness Week, April 21-26, 2014, You can choose from a huge range of ways to get involved.  Be proactive and be heard!  You are welcome to attract as much media attention as possible.   Ask your local newspaper or community newsletter to include a story about you and porphyria or just write an article on your experience.  You can be involved in any way that works with your schedule, resources, community, and interests.  The APF will help you accomplish your own activity by providing:

Porphyria Brochures, A Porphyria Live DVDs, Fact sheets, Powerpoint Presentations and materials for medical seminars, Press releases for local newspapers and television and other suggestions.  Even if you cannot organize an event, the materials are invaluable to health professionals, colleges, hospitals, employee assistance programs and all types of health organizations.

Tell Your story to local media. Help others by spreading your experience.  Television, newspapers, community magazines are looking for people who have undertaken the challenge with a major or rare illness to help others in a similar situation.


A great example about enhancing Porphyria awareness was set by the Cook brothers, Cason (11) and Caul (10) and family who started a Porphyria Awareness Week HAT DAY tradition in their hometown of Vernon, Texas.  Both brothers have EPP, and they wanted not only to increase awareness, but also to raise money for the APF, so everyone at their schools who wanted to participate could wear a hat in honor of the brothers and bring $1 for the APF.


Help others by sharing knowledge about porphyria with your community, including your family members, friends and the physicians in your local hospitals.


Rob Saupe shared his incredible hiking experience. He covered a total of 100 miles over the 45 days on a local mountain trail.  Rob logged his miles online so that the community could follow his progress.  He sat a great example of personal strength and perseverance.  Rob encouraged a donation to the APF Physician Education Program Campaign.


Assist at medical conventions or health fairs.  Ask your doctor if there is a local meeting where you can hand out materials or tell your experience.  Befriend your physicians, and they will share their newfound knowledge of the disease.

Michael Drew and Charles Johnson and volunteered to man the APF exhibit booth at the Liver Meeting in Boston.  Diana Ijames set up an exhibit about EPP.  She also went to Washington to meet with the FDA to teach them about EPP.


Volunteer your talents or skills to help achieve the educational programs of the APF.  You are talented, let’s use it for our common good, for example, donate your paintings, sculpture, computer expertise, business acumen etc. for our fall raffle or to help APF.


Polly Barton Harvard ran the New Orleans Marathon.  Hopefully, you will run the race that the APF will be organizing later in the year.

Learn how to be an advocate in your daily life and share your knowledge everywhere.

Tracey Yelen and Amy Chapman “starred” in a video explaining the benefits of Panhematin in their lives. Dr. Lisa Kehrberg explained her experience of horrible pain of an acute attack.


** Past and Present Porphyria Awareness and Fundraiser Events. **

Apr 20 2014 - 12:01pm to Apr 26 2014 - 11:59pm