Monday, August 15, 2016

APF Announcements

The American Porphyria Foundation wants YOU to be aware that there are many trials going on in the Porphyria community.  

This is critical to learning more about the Porphyrias, and ultimately a cure.  Current steps for instance for those who suffer from EPP have a chance to meet with the FDA for approval soon of a new drug.  In addition, the Acute Porphyrias are being treatment for a new type of drug.  

We are always looking for those who are interested in participating in research answering questions, to travel and meeting with an expert or more importantly getting a better manageable system in place to manage your type of Porphyria.

Please use this link to learn more about the trials at the below links:

https://clinicaltrials.gov/ct2/results?cond=%22porphyria%22

http://rarediseases.org/

Also note:
If you have not become a member of the American Porphyria Foundation why not do so today. 
 Membership is free.  

 If you would like to make an annual contribution to the APF of $30.00 
you will benefit from the events, newsletters, enews and special announcements, meetings and patient gatherings.

The APF is a non-profit organization so your participation and support will go a long way in continuing the many fine education, and PTF (protect the future doctors)

Also we have many exciting items for sale you can look to the APF: www.porphyriafoundation.org

We have wonderful EPP & Acute ED Emergency guidelines books also available for a small fee please contact the APF 1/866/apf/3635

If you have not received your free patient kit or asked for your physician comprehensive Dr. Kit we would be most happy to send those out to you and your Doctor.  
Please contact the APF 1/866/apf/3635

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


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