Wednesday, April 3, 2013

Important news.....Read all about it be informed and support the APF

Important news.....

Porphyria Awareness Week!

The Annual National Porphyria Awareness week will be held April 14th-20th 2013.

Bringing awareness to our communities, medical providers and loved ones starts with YOU.

In years past, we have had members contact their local media to do an interview or suggest an idea for a story about porphyria.  Others have held events like hikes, races, medical fairs and presentations on porphyria. 

Our young members have been especially creative including their schools in their awareness activities.  The Cook brothers are hosting Hat Day again this year in their community schools. Everyone wears a hat and brings a dollar to promote EPP awareness and its photosensitivity, as well as raise funds for the APF.

Even bringing educational materials to your doctor's offices is a very important effort.

No matter how big or small your activity, you can enhance porphyria awareness every week of the year.  But Porphyria Awareness Week is a great time to start.   The APF is all of us and this week gives us the opportunity to educate physicians and the public about porphyria.

If you need help with ideas or educational materials please contact the APF office. 1.866.APF.3635 .

Join the Porphyria Registry.

The Porphyria Consortium needs more Porphyria patients and their families to join the Porphyria Registry to be able to receive the Government funds to continue their present and future research projects. 
 Ongoing Research projects include:
  •  Longitudinal study of all the Porphyrias.
  • Recurring attacks in the Acute Porphyrias.
  • Erythropoietic Protoporphyrias: Studies of the Natural History, Genotype-Phenotype Correlations, and Psychosocial Impact (7207). If you need any help in signing up for any of these Research projects please contact the APF.  1.866.APF.3635.

FDA Letters From People with EPP:

 EPP friends and family members, please write a letter to the FDA. The reason is that we need to assure them that people with EPP are in grave need of a treatment.  Read more.....

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

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