Awareness Week Activities for Everyone

National Porphyria Awareness Week is coming up soon, what will you do this year to educate your community about porphyria?

Get the porphyria story into local media

Contact the APF for our new Quick Guide to working with the media. We can help you define your message, develop a targeted media list, access local calendar listings and pitch your story concisely and persuasively.

You don't need special skills to get started-just your energy and bright ideas! Contact us for a quick guide to working with the media to get you started.

Educate your doctors and healthcare professionals

Bring the APF's brochures, Porphyria Live! DVD or ER/EPP Kit to your next medical appointment, so you can discuss porphyria with nurses and others during your visit. Call around to local hospitals or ask your doctor about hosting a seminar or grand rounds on porphyria. The APF has a PowerPoint presentation authored by a panel of porphyria specialists, and a 30-minute documentary DVD to help you educate physicians and others.

Your doctor also can follow a free, one-credit Continuing Medical Education (CME) course about porphyria at http://www.porphyriafoundation.com/for-healthcare-professionals/

Host a Fund Raising Event

Host a fund raising event for the APF to help us improve patient, physician and public awareness. Your financial support provides for the assistance we deliver to thousands of patients and physicians annually possible.

APF members have held wrestling matches, concerts, walk-a-thons, car washes, school class solicitations, plays. You can even host a dinner or open house, speak briefly about porphyria and collect donations. Please send us your idea, and we will send you the materials to accomplish your goal, including a letter explaining that you are hosting the event for us and the type of work funds will support.

Raise Your Voice to Raise Awareness!

EPP Patients: If you or a family member have been diagnosed with erythropoietic protoporphyria and are interested in volunteering for clinical trials of a new medication to prevent or reduce your symptoms and have not already spoken with us, please call the APF toll-free at 866-APF-3635 (273-3635).

AIP Patients: If you have frequent acute intermittent porphyria attacks and would like to volunteer for research, please contact Dana Doheny at the Mount Sinai Porphyria Lab: 212-659-6779 or toll-free: 866-322-7963. Volunteers will submit a blood sample for DNA studies. Call for details.