Friday, March 24, 2017

National Porphyria Awareness Week (NPAW) is right around the corner.

  

National Porphyria Awareness Week (NPAW) is right around the corner.
NPAW: April 22 - 29, 2017
See the story below as a great example of how to raise awareness in your community. 
For the second year in a row, the Cook family put on a fantastic benefit barrel race.  As you may know, the Cook brothers, Cason and Caul, have EPP and have set a great example about enhancing awareness of the disease   in their local area.  They have been hosting a Hat Day, supporting the APF and porphyria awareness, for many years in their hometown of Vernon, Texas.

There were over 159 entries for the race and an incredible outpouring of support from the community with volunteers and sponsors.
 Cook Family 1
Watch for stories like this from individuals and families who have changed the world of Porphyria Awareness in the community.

It is our hope that you will become involved in this year's awareness
activities.  
Let's RAISE PORPHYRIA AWARENESS!


Porphyria Awareness Week

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

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Organizations around the world unite for Porphyria links

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