June BG

Global Genes RARE Portal 

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.

Who We Are


An orange icon of a molecule shape connecting icons of people

Find others like you, seek advice and share common challenges.



An orange icon of a person reading an open book

Discover and join communities to enrich your experience and learning opportunities.



an orange lightbulb icon

Join in discussions with your peers and industry leaders to expand your knowledge.



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 this link to 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.

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. 

Unanswered Questions

Log in to see this information

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


Latest Discussions

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


    Quick Links

    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.

    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.

    Global Genes Tweets

    Global Genes RARE Daily

    • Ashley Walker was spent the first 20 years of her life misdiagnosed as having a form of muscular dystrophy. It was only after her twin sons Alexander and Jayden suffered severe respiratory complications following their birth that she and her boys were all diagnosed with X-linked myotubular myopathy, a rare neuromuscular disease. Though the condition The post An Advocate’s Journey through Diagnosis, Loss, and Hope appeared first on Global Genes .
    • The BasicsName: Kimberly Ventarola Title: Co-founder and president Organization:  Malan Syndrome Foundation Social Media Links:   Disease focus:  Malan syndrome is a rare genetic neurodevelopmental and overgrowth disorder caused by a change in the Nuclear Factor One X (NFIX) gene. The NFIX gene is located on the short arm (called p) of chromosome 19 at The post Rare Leader: Kimberly Ventarola, Co-Founder and President, Malan Syndrome Foundation appeared first on Global Genes .
    • Rare Daily Staff Rallybio, which develops antibodies targeting rare diseases, raised $80.6 million in an initial public offering of 6.2 million shares of common stock at $13.00 per share, the lower end of its proposed range of $13 to $15. The shares will trade on the Nasdaq Global Market under the ticker symbol “RLYB.” In The post Rallybio Raises $81 Million in IPO to Advance Therapies for Rare Diseases appeared first on Global Genes .