June BG

Global Genes RARE Portal 

Who We Are


UPDATE: Today Jan. 30, 2023 you should see changes to our login.
The login will function largely the same as it has but with fewer steps for most users.

It will have a different visual look. We hope this creates an easier user experience.

If you are having trouble logging in contact helpdesk@globalgenes.org

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If you're having trouble logging in, begin by clearing your browser cache.

  1. Go here and click on login. The window will pop-up and ask for your email. 
  2. Once your email is entered it will ask you to either enter your password or set your password. If you do not have a password, or you need to set your password you will receive an email with a code in it to verify your email. 
  3. Check your spam if you do not see the email in a minute or less. Enter the code and set your new password. This will then ask you to login with your email and new password.
  4. It may still appear as if you are NOT logged in. Just click the blue Login button and you’ll be in.


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Until you do many sections here will appear to have no content, and links you receive in emails from us to content here will not work.

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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

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Popular Discussions

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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

  • Rare Daily Staff The United Kingdom’s National Institute for Health and Care Excellence, the drug price watchdog, [] The post NICE Recommends PTC’s AADC Gene Therapy appeared first on Global Genes .
  • Rare Daily Staff PTC Therapeutics Founding CEO Stuart Peltz said that he is stepping down after 25 [] The post PTC and Innozyme CEOs Each Announce Their Retirement appeared first on Global Genes .
  • Global Genes is pleased to announce the Rare Disease Patient Advocacy Organizations receiving 2023 RARE Mental Health [] The post 2023 RARE Mental Health Grant Recipients Announced appeared first on Global Genes .