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Global Genes RARE Portal 

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.

Who We Are


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Find others like you, seek advice and share common challenges.



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Discover and join communities to enrich your experience and learning opportunities.



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Join in discussions with your peers and industry leaders to expand your knowledge.



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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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    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.

    Global Genes Tweets

    Global Genes RARE Daily

    • Name: Matt Larsen Organizations you represent: Illinois Spina Bifida Association, Executive Director What led you to the rare disease community: Having close family friends and relatives with rare conditions taught me the strength of family teams and their circles of support.  I am grateful for the opportunity to bring together a network of family teams The post RARE Foundation Alliance Member Spotlight: Matt Larsen appeared first on Global Genes .
    • The BasicsName: Kevin Mead Title: Executive Director Organization: International Pemphigus Pemphigoid Foundation Social Media Links: Disease focus: Pemphigus is a group of potentially life-threatening disorders characterized by blisters in the mucous membranes and skin. The blistering in pemphigus happens because of an immune response resulting in autoantibodies attacking the glue that holds mucous membranes The post Rare Leader: Kevin Mead, Executive Director of the International Pemphigus Pemphigoid Foundation appeared first on Global Genes .
    • Rare Daily Staff AbbVie has exercised its exclusive right to acquire TeneoOne, an affiliate of TeneoBio, and TNB-383B, a BCMA-targeting immunotherapeutic for the potential treatment of relapsed or refractory multiple myeloma. Multiple myeloma is a rare cancer that forms in plasma cells, a type of white blood cell, in the bone marrow. The cancerous plasma The post AbbVie Exercises Right to Acquire TeneoOne and Lead Asset Targeting Multiple Myeloma appeared first on Global Genes .