National Porphyria Awareness Week Events

Dear Members,

National Porphyria Awareness Week is just around the corner, April 20-26! We continue to share the stories and events of our members who are enthusiastically promoting Porphyria Awareness in their communities.

  • On Monday, 4/14/14, the APF member, Pierre Mouledoux, went before the Louisiana State House of Representatives Transportation, Highways and Public Works Committee to testify for the legislation regarding tinted windshields for Medical Exemptions. The current law is an exemption granted pursuant to this section shall not apply to the area below the top six inches of a motor vehicle windshield, "unless specifically authorized by the optometrist or physician granting or requesting the medical exemption below the top six inches".   As a result of Pierre's efforts in Committee, the text was then amended to include: "a patient who is diagnosed with a light sensitive porphyria." Next the amended bill heads to the Louisiana House of Representatives for a floor vote. If approved, it goes to Senate Committee and if approved, moves to the senate floor for passing then to the governor for signature into law.

We would like to ask our members in Louisiana, who have photosensitive porphyria, to please contact your Louisiana State Representatives and State Senators to urge passing of the legislation.

  • Cindy Craig is visiting hospitals and medical professionals in her area to distribute awareness materials. The ER team of her hospital ordered an Emergency Room kit with the guidelines for the porphyrias. Cindy is also inquiring if the National Porphiria Awareness week can be acknowledged at the state level in Missouri.
     
  • Lorri Stewart got in touch with Public Relations department of Caldwell Memorial Hospital, Lenoir NC. PR representative is going to let Lorri present information and hand out materials at their upcoming monthly meeting. She will also present brochures and talk about porphyria with Emergency Department personnel of the hospital. Besides, Lorri is donating paintings on behalf of all porphyria sufferers in an effort to raise awareness of the porphyrias.

We would like to thank all APF members for their legislative efforts, for educating physicians and others in their communities and for raising porphyria awareness! To get awareness materials contact the APF office 713.266.9617.

 

"Remember....Research is the key to your cure!"

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