Home

June BG

Global Genes RARE Portal 

Who We Are

Welcome!

NOTE: If you have not logged in since June 30th, we made improvements to our login process.

For your first time after June 30, you will need to login as if "I forgot my password"

  1. Click the blue Login button (top right) and then select “Forgot Password”  

  2. Enter your email address

  3. You’ll get an authentication code by email

  4. Enter code and then set your new password, Submit.

  5. Once you have logged in you’ll be routed back to www.rarecommunity.org on the home page.

  6. It will still appear as if you are NOT logged in. Just click the blue Login button and you’ll be in.

 If you never had a RARE Portal account with us and would like one, you can make that request here.

 

It looks like you haven't logged in.

Until you do many sections here will appear to have no content.

Connect and engage with others like you through discussions and events.

Empower yourself through education - with over 600 tools and resources.

Inspire others with your own story, and be inspired by reading the latest news and community stories.


How does the Global Genes RARE Portal benefit you? 

  • Network with your peers, worldwide.   
  • Find and share resources  
  • Collaborate and initiate discussions with other rare disease stakeholders
  • Decide what personal data you want to share with the community. 
  • Make meaningful connections with others who share a similar health journey. 
https://www.rarecommunity.org/

Unanswered Questions

Log in to see this information

Either the content you're seeking doesn't exist or it requires proper authentication before viewing.

https://www.rarecommunity.org/

Latest Discussions

  • No data found
  • https://www.rarecommunity.org/

    Quick Links

    Polls



    A blue bar with the text Tag Cloud and an icon of a cloud

    The tag cloud below is a quick way to see what topics are trending in our communities. Bigger words have had more posts recently.  Click on any tag to see all the posts with that tag.  Don't forget to hashtag your own posts and replies.

    Recent Shared Files List

    Log in to see this information

    Either the content you're seeking doesn't exist or it requires proper authentication before viewing.

    Global Genes Tweets

    Global Genes RARE Daily

    • Rare Daily Staff The U.S. Food and Drug Administration has made a $1.2 million grant to ReveraGen Biopharma and Santhera Pharmaceuticals to support the clinical study of the experimental therapy vamorolone in adults and children with the progressive muscle wasting disease Becker muscular dystrophy. The funding, made under the FDA’s Clinical Studies of Orphan Products The post FDA Awards Grant to ReveraGen and Santhera to Fund Trial appeared first on Global Genes .
    • Rare Daily Staff Use of clinical whole-genome sequencing outperforms usual care by two-fold both in terms of diagnostic efficacy and change of clinical management of acutely ill newborns suspected of having a genetic condition, according to a new study. The study, published in JAMA Pediatrics and conducted by scientists at the sequencing company Illumina and The post Study Shows Whole-Genome Sequencing Improves Care of Critically Ill Infants appeared first on Global Genes .
    • Rare Daily Staff The U.S. Food and Drug Administration lifted the clinical hold on a clinical study of GeneTx Biotherapeutics’ and Ultragenyx Pharmaceutical’ GTX-102, their partnered experimental treatment for Angelman syndrome. GeneTx may begin dosing naïve patients in the phase 1/2 study of GTX-102 in pediatric patients with Angelman syndrome. GeneTx previously received clearance, under The post FDA Lifts Hold on Trial of Experimental Treatment for Angelman Syndrome in U.S. appeared first on Global Genes .