June BG

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.

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. 


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    Global Genes RARE Daily

    • Daniel Levine: Kari, Ashley, thanks for joining us. When someone receives a diagnosis of a rare disease, they often find themselves in a strange land with no roadmap. The Tuberous Sclerosis Complex Alliance is helping patients with TSC better manage their condition with the TSC Navigator, an online tool intended to guide individuals and families The post A Map to Navigate a Rare Disease appeared first on Global Genes .
    • Rare Daily Staff The U.S. Food and Drug Administration approved Aadi Bioscience’s Fyarro for intravenous use for the treatment of adult patients with locally advanced unresectable or metastatic malignant perivascular epithelioid cell tumor, an ultra-rare and aggressive form of sarcoma with a strong female predominance. Advanced malignant perivascular epithelioid cell tumor (PEComa) are a rare The post FDA Approves Aadi Bioscience’s Fyarro for Patients Rare Cancer appeared first on Global Genes .
    • Rare Daily Staff BioCryst Pharmaceuticals, Royalty Pharma, and OMERS Capital Markets, entered into transactions totaling $350 million in new funding for BioCryst, with all funds immediately available at closing. The funds from these transactions will enable further advancement of BCX9930, BioCryst’s oral Factor D inhibitor, which targets complement-mediated diseases, toward filing for registration in paroxysmal The post BioCryst Adds $350 Million in New Financing with Royalty Pharma and OMERS Capital Markets appeared first on Global Genes .