This blog is dedicated to all the Porphyria patients worldwide.
The American Porphyria Foundation will provide updates and information here, as well as on the main site - http://porphyriafoundation.com .
Thursday, April 2, 2015
NPAW! What is it?
National Porphyria Awareness Week 2015
National Porphyria Awareness Week (NPAW) April 11-18, 2015 is the week that the APF collaborates with YOU to enhance porphyria awareness in your communities. You can choose to initiate your own activity to promote awareness. Some of YOU have participated in health fairs, seminars, fundraising and media events. The APF will supply you with materials to make your awareness activity a success.
We also ask you to take every opportunity to spread the word about porphyria. Your effort can be as simple as purchasing an APF T-shirt or giving out medical information to your doctors or showing the APF Porphyria Live video to your family and friends. Every community needs to hear about porphyria, and you are the person to do that in your community. Please contact the APF for supplies.1.866.APF.3635
Speak Up ~ Speak Out ~ Educate Share Your Story ~ Get Involved
Get Involved ~ Join and Share the Event.
April 11-18, 2015 - National Porphyria Awareness Week. NPAW is the time we ask all people with porphyria to bring awareness to your own cities. NPAW has been very successful for the past ten years. Let's make this year the greatest! You can be involved in any way that works with your schedule, resources, and interests! Join the awareness movement in your local community! Together we can make a difference. Education and awareness are the first steps of treatment!
11 April 2015 - A Kick Off ride for the Shadow Ride on the famous Drummond and Hull ranches near Tulsa, Oklahoma in Pawhuska. There will be fun for everyone: live music, games, miniature donkeys to ride for the kids, the opportunity to meet other porphyria friends and Mary Hull's delicious Bar-B-QUE, plus, of course, The Shadow Ride TEAM.
12 April 2015 - Patient education meeting. Note the day following the Shadow Ride on April 12, 2015, the APF will host a patient education meeting in Oklahoma City, OK with porphyria expert, Dr. Sylvia Bottomley. The meeting will take place from 2-5 pm at the fantastic National Cowboy and Western Heritage Museum.