Friday, April 26, 2013
Sign UP its free, Lifesaving. Porphyria Invite.
I wanted to take a few moments to suggest signing up for these groups. These groups are designed for you at no cost.
When you sign up for the http://rarediseasesnetwork.epi.usf.edu/porphyrias/index.htm you are signing up to participate in research projects answering questions about your type of Porphyria, you have questions, your chance to support these programs for possible medications and cures are so necessary. These are great Expert Doctors that are interested in learning about you and your family. Sometimes it’s a simple process of answering questions, a phone call, a trial drug, or a blood & urine sample! So please sign up and explore this site.
Next we have the http://porphyriafoundation.blogspot.com. This is supported by the American Porphyria Foundation. It is also free to join. Learn about upcoming events, read members stories, be encouraged that you are not alone. Try a recipe, learn some tips from the Experts. Be INVOLVED!
Do you enjoy interacting with other patients, doctors from all over the world that also have Porphyria? I know I do. When you sign up for free to a program called: RareConnect~https://www.rareconnect.org/en you can find diagnosed Patients with all types of people all over the world, new and exciting news, learning opportunities, announcements, how medicine and trials are making progress, start discussions get answers. Learn how Porphyria affects each one of us.
So what are you waiting for, please join your support, experiences and encouragement are what we all need. Please show your support for such programs they may not always be available to us.
Remember.....Research is the key to your cure!
The Story Sian is a 12 year old, aspiring dancer from Topeka, KS. Her dedication, hard work, and determination has provided her a wond...
Happy Thanksgiving everyone 2017
4. The Pain Scale Is Useless to Us There’s that pain scale, numbered one through ten, with increasingly dour expressions on the faces...
Rocco suffers from erythropoietic protoporphyria (EPP), a genetic disorder that makes skin extremely sensitive to sunlight. The often almos...