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National Porphyria Awareness Week 2016

National Porphyria Awareness Week 2016

This is the time of year that each of YOU has the opportunity to reach out to advance porphyria awarenss in your local and medical communities.  YOU are key to spreading knowledge about porphyria. For example, the Cook family has enhanced awareness in Vernon, TX by hosting a Barrel Race and educating kids in school about EPP. Amanda Boston teaches her nurses and doctors about porphyria with her every hospitalization. Claire and Bob Sadowniczak manned the APF porphyria booth at the Hematology Convention. Louise Schlosser is hosting a patient support  meeting.  Amy Chapman writes a blog and Rob Saupe' assists with the APF website, Amy Rose Burke is a Facebook administrator. There are countless ways to enhance awareness.  The APF will provide you with materials to help with your venue and will be glad to make suggestions to accomplish your goals if you need assistance. There are many ways to spread awareness in your own community, including the suggestions below:
  • Tell your story to the local television, radio or newspaper
  • Share your knowledge with doctors or at your hospital seminars
  • Set up exhibit booths at local health fairs or medical meetings
  • Assist the APF at national medical conventions
  • Volunteer your talents to help  achieve the APF patient educational projects
  • Host a community race or car wash to benefit APF physician education
  • Volunteer your skills, like computer skills, or business acumen
  • Host a Fun Run or Walk-A-Thon or even a Night Run or Twilight Walk
  • Share your story in the Member Story Section of the APF website


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