Wednesday, February 27, 2013
Join Rare Connect, Why? & What It Is!
What is Rare Connect? Once you sign up it's free and you become a member. You are Connecting with Patients of Rare disease Globally! There is Information from many of the Porphyria Centers worldwide, we ask questions, we talk, we read and join in excellent conversations! So if you see any familiar faces say "HI" and become friends and if you or know someone with another disease join that group to. We are excited for all of you to join in this process. All groups are monitored and all have good guidelines to follow and it's so simple to use. If you have any problems or signing up please contact AmyLChapman1992@gmail.com and she will be happy to assist you.
"Research is the Key to Your Cure"
Type of Porphyria: Acute Intermittent Porphyria (AIP) Sive Ngalo of Ekasi Hub interviewed Athi Koti. Below is my story ...
Erythropoietic Protoporphyria What is erythropoietic protoporphyria? The word ‘erythropoietic’ means associated with red blood cells (‘...
Happy Thanksgiving everyone 2017
#PAW2018 This year, each day we will bring you a member story of each type, a Medical Fact on each type, Medications approved ...