Monday, January 21, 2013

National Porphyria Awareness Week April 14-20, 2013 is about YOU!

National Porphyria Awareness Week April 14-20, 2013 is about YOU!

The challenge of living with porphyria starts with how little is known about it among friends, family and the medical community. You are the way this group of people can be reached. During National Porphyria Aware-ness Week April 14-20, 2013 (NPAW), YOU have the opportunity to enhance porphyria awareness in your sphere of influence. Here are some suggestions for ways that you can help:

*SHARE knowledge about porphyria at your doctor’s offices and local hospitals. You might suggest that they host a seminar or grand rounds on porphyria; ask if there is a local meeting where you can hand out materials. 
*ASSIST at medical conventions or health fairs to educate laypersons and physicians on porphyria.

*TELL your story to local media. Television, newspapers, community magazines are looking for human interest stories about people who have encountered a major illness and have undertaken the challenge. 

*VOLUNTEER your talents or skills to help achieve the educational programs of the APF. For example, donate one of your paintings, sculpture, computer expertise, business acumen etc. for our fall raffle or to help APF.

*HOLD a community race, car wash or other fund raising activity.

*HONOR your loved one with a gift to the APF for a birthday, anniversary, holiday or memorial tribute.

*WRITE a letter to friends and family asking them to consider making a donation to the APF;

*ASK your local newspaper or community newsletter to include a story about you and porphyria or just do an article on porphyria. Every article helps increase awareness. 

*LEARN how to be an advocate in your daily life. There are many opportunities to share knowledge of porphyria.

*BEFRIEND your physicians and they will share their new found knowledge of the disease. 

*HOST a patient meeting and share your experiences and your successes in advancing porphyria awareness. 

The APF can help you accomplish these goals by providing materials: Porphyria Brochures, A Porphyria Live DVD,
Fact sheets, Powerpoint Presentations, Information for Grand Rounds, Ideas to set up Medical Seminars and Health Fairs, Information to gain press coverage, Press Releases for local newspapers and television and many more.

No comments:

Post a Comment

Alie Campbell VP

ALIE CAMPBELL PORPHYRIA and ME TYPE OF PORPHYRIA Variegate Porphyria (VP) My story is probably not much different than most. I...