Skip to main content

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"

Welcome!

Hosted by trusted patient advocates, this is a place where rare disease patients can connect with others globally.Come in and learn more >
JOIN NOWIt’s Free!

Our Communities

Our Communities
Find an online community for your area of interest. Meet, interact and learn from your peers and medical experts. We have 39 rare disease communities with more to come soon!
SELECT YOUR COMMUNITY

Join RareConnect

Join RareConnect
Meet and interact with others who share your condition in a supportive and friendly environment. Find the information and support you need and share your own experiences.
JOIN NOW

Member Story

Read Vittoria's Story
Vittoria's Story - Hello my friends, my name is Vittoria and I am very happy to make your... Read more >

Events

  • 4th International WM Patient Forum4th International WM Patient Forum - WMUK will be one... More >
  • Wochenendseminar für Betroffene und Familien mit Tyrosinose Typ 1 und AlkaptonurieWochenendseminar für Betroffene und Familien mit Tyr... More >
  • 2nd Meeting of VHL Patient Group Leaders - For furthe... More >
- See more at: https://www.rareconnect.org/en#sthash.8Z3sQ5Sk.dpuf

Comments

Popular posts from this blog

Amazing patient advocacy....and needed media for this issue. Thank you Terri Witter!

Q & A WITH PORPHYRIA EXPERT, DR. BRUCE WANG, UCSF

Q & A WITH PORPHYRIA EXPERT, DR. BRUCE WANG, UCSF 
The APF asked our Facebook friends for their top questions they would ask a porphyria expert.
 The following questions were submitted to Dr. Wang for his responses ... Q. Does EPP give us bad teeth? Also, do people with EPP get stomach pains or is that with the other porphyias? A. The porphyrin that accumulates in EPP patients is protoporphyrin IX, which does not cause discoloration to teeth or abdominal pain.
 The type of porphyria that leads to discolored teeth is Congenital Erythropoietic Protoporphyria. The porphyrias that lead to episodic abdominal pain attacks are the acute hepatic porphyrias. Q. I have EPP and I have a severe reaction on my hands and lips. Do I seek urgent care? Also, what can you even do when you burn your lips? A. The acute reactions to sunlight in EPP can be very severe and, unfortunately, there are not many effective options to treat the symptoms. Nonsteroidal anti-inflammatory drugs (NSAIDS such as ibup…