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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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

  • Mammoth Biosciences is developing next-generation CRISPR products using alternatives to the Cas9 enzyme to read and write genetic code. The company, co-founded by Nobel laureate and CRISPR co-inventor Jennifer Doudna, is applying the technology broadly beyond therapeutics to include not only diagnostics, but agriculture, environmental monitoring, and biodefense. We spoke Trevor Martin, co-founder and CEO The post Expanding the CRISPR Toolkit appeared first on Global Genes .
  • Rare Daily Staff David Pearce, president of innovation, research and world clinics at Sanford Health who has led the creation of the CoRDs registry, was named chair of the International Rare Diseases Research Consortium. Pearce brings decades of experience in children’s health research to the consortium assembly, including focused research of rare diseases in children. The post Sanford’s Pearce Names Chair of IRDiRC appeared first on Global Genes .
  • Rare Daily Staff Alnylam Pharmaceuticals reported that the HELIOS-A phase 3 study of vutrisiran, an experimental RNAi therapeutic in development for the treatment of transthyretin-mediated (ATTR) amyloidosis, met all secondary endpoints measured at 18 months in patients with hATTR amyloidosis with polyneuropathy. The positive results included statistically significant improvements in neuropathy impairment, quality of life, The post Alnylam Presents Positive 18-Month Results from Phase 3 Study of Vutrisiran in Patients with hATTR Amyloidosis with Polyneuropathy appeared first on Global Genes .