June BG

Global Genes RARE Portal 

Who We Are


White text on blue reads: RARE Patient Advocacy Summit click to view

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NOTE: If your last logged in here was prior to June 2021 you will need to login as if "I forgot my password"

Begin by clearing your browser cache.

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

  2. Enter your email address using only lower case.

  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.

Using this second method  you will need to wait 30 minutes after you get your reset code before logging in.


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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. 


Upcoming Events


Popular Discussions

A screenshot of a poll in progess with bar chart, the question asked is What topics should we discuss more on the portal, click to take the poll.

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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.
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Global Genes RARE Daily

  • Organization Name: A Kid Again Disease Affiliation: Life Threatening Conditions Organization Mission: We exist to foster hope, happiness, and healing for children with life-threatening conditions and their families. What led you to the rare disease community? Our Founders their passion for serving children with life threatening conditions. What do you think are the areas The post RARE Global Advocacy Alliance Member Spotlight: Ann Fixari appeared first on Global Genes .
  • Author: Rachel AlvesPatient or Advocate: Audrey Alves Disease Affiliation: CASK Gene Disorder Besides a traumatic emergency C Section along with concerning head circumference, all newborn screenings checked out okay. They told us to watch for milestones not being met and sent us on our way. Feeding was a challenge and keeping her growing became a The post Audrey Jo #KickingCASK appeared first on Global Genes .
  • Author: Cari CrosbyPatient or Advocate: Josie CrosbyDisease Affiliation: Leigh syndromeJosie is a sweet 4 year old girl living with Leigh Syndrome. When she was two months old, her family rushed her to the hospital because she started having seizures. After an MRI and a genetics test, her family was told that she had a rare The post Josie becomes A Kid Again appeared first on Global Genes .