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Global Genes RARE Portal 

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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.


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

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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. 

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    Global Genes RARE Daily

    • Rare Daily Staff Wave Life Sciences and Takeda Pharmaceutical amended their ongoing collaboration, immediately discontinuing the discovery research component that provided Takeda with the right to license multiple preclinical programs for central nervous system indications over a four-year research term. Under terms of the amendment, Takeda will pay Wave $22.5 million for collaboration-related research and The post Wave Life Sciences and Takeda Amend CNS Collaboration appeared first on Global Genes .
    • Rare Daily Staff Sana Biotechnology, a company focused on creating and delivering engineered cells as medicines, entered into an agreement with Beam Therapeutics for non-exclusive commercial rights to Beam’s CRISPR Cas12b nuclease system for certain ex vivo engineered cell therapy programs. Under the terms of the agreement, Sana agreed to pay Beam an upfront payment The post Sana Obtains Non-Exclusive License to Beam’s Gene Editing Technology appeared first on Global Genes .
    • Rare Daily Staff California Governor Gavin Newsom vetoed legislation in California that would have created a Rare Disease Advisory Council. A total of 21 states have established Rare Disease Advisory Councils since 2015, and nine others were in the process of forming one, according the National Organization for Rare Disorders. “While it is important for The post Newsom Vetoes Legislation to Create Rare Disease Advisory Council in California appeared first on Global Genes .