Thursday, October 17, 2013

Important message ~ National Porphyria Registry

Important Notice...
Porphyria experts have created a National Porphyria Registry-a type of partnership between the porphyria experts and YOU as a way to share information about YOUR health and treatment.  Also, it is the best means to determine the incidence of porphyria and prove that there are enough porphyria patients who want improved health care to warrant government funding.  If we don't speak up, we will be left behind when research grants are presented.    Please join the registry!  
button-join now

Joining the Porphyria Registry is anonymous, and there is no cost to you. All data will be stored in a secure, computerized database. No personal identifying information will be given to anyone without your expressed approval.  Please note that joining the Registry is not the same action as joining the APF. 

To better understand National Registries, you can attend the following webinar on Oct 23, 2013. 

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

No comments:

Post a Comment

#PAW2018 Medical Moment ~ Acute Intermittent Porphyria

#PAW2018  This is one of the hereditary hepatic porphyrias. Its inheritance is autosomal dominant. The deficient enzyme is porphobilinog...