Friday, April 25, 2014

Research Studies Available!

Research Studies Available!
Dear APF Members,
We hope you will consider being a part of seven ongoing research studies. Now is the time to join the many other people who are helping porphyria researchers in finding new treatments leading to a cure. In the following E-news we will cover each study individually.
In most research studies, you will not be asked to take an experimental drug, rather, you will be asked to contribute your blood, DNA and/or urine and answer pertinent questions. Patients, who participate in research, make it possible for researchers to find new treatments, create new studies and work for the improvement of lives that are affected by rare diseases.
By joining our registry, you will be contributing to the research of the Rare Diseases Clinical Research Network.
Participation in research makes it possible for researchers to:
  • provide the best possible care to patients affected by rare diseases
  • improve methods in studying your disease
  • achieve deeper understanding of your disease and its causes
  • find new treatments
  • create new studies
Please contact the APF 713.266.9617 to see the list and parameters. You will be placed in direct contact with the research team.

APF T-Shirt Awareness Fundraiser
The National Porphyria Awareness Week is in its full force! Let's continue to educate our families, friends, physicians and others about porphyria. If you want to give your loved one a gift and raise awareness for the American Porphyria Foundation consider getting an awareness t-shirt!
T-Shirt Fundraiser is being run and managed by the APF Member and Volunteer Amy Chapman. Please see the website for ordering information and details

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

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Genetic Changes in Porphyria

Each form of  porphyria  results from mutations in one of these genes:  ALAD ,  ALAS2 ,  CPOX ,  FECH ,  HMBS ,  PPOX ,  UROD , or  UROS . ...