Is Your Membership Up to Date?The fresh issue of the 3rd quarter Newsletter will hit your mailboxes in a few weeks! Make sure that your subscription and address is up to date! With you voluntary donations the APF is able to maintain our Newsletter, comprehensive physician and patient education programs and many other services. We do not receive government funding to run the APF, rather we receive donations from you, your friends, your family and people interested in the porphyrias. Please help us produce these materials!Be A Medical Hero!We are looking for 10 more patients-volunteers for the Phase 1 Alnylam Natural History Study. We are also enrolling patients to the EXPLORE trial, a prospective observational study of patients with acute hepatic porphyrias - including AIP, variegate porphyria, and hereditary coproporphyria - suffering from recurrent attacks.With these studies, Alnylam and clinical investigators aim to learn more about the clinical course, management, and disease burden of patients with acute hepatic porphyrias that suffer from recurrent attacks.Volunteering for research is the most important action you can take to change your future health because Research is the Key to Your Cure. You can be a Medical Hero and join many patients, who gave a day or more of their lives to help find important answers leading to new and improved treatments and a cure.Please, contact the APF to get enrolled: 713.266.9617.Amazon Smile :)Please support the APF through the AmazonSmile program! Amazon will donate 0.5-0.8% of the price of your eligible purchases, at no cost to you.Please note, the program will only be available to shoppers who visit Amazon via a special web address - http://smile.amazon.com/ch/36- 4401266It is easy and free, AmazonSmile is the same Amazon you know. Same products, same prices, same service. Thank you for supporting us!
"Remember.... Research is the key to your cure!"
Friday, August 7, 2015
Bright Ideas! This is a place for kids to learn from others with EPP, to share their own tips and tricks on things like what to wear...
Happy Thanksgiving everyone 2017
EXCITING ANNOUNCEMENT!! You can now receive FREE genetic testing (DNA) and counseling for acute porphyria. DNA can tell a person if the...
4. The Pain Scale Is Useless to Us There’s that pain scale, numbered one through ten, with increasingly dour expressions on the faces...