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Global Genes RARE Portal 

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  1. Click the blue Login button (top right) and then select “Forgot Password”  

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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. 

https://www.rarecommunity.org/

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Popular Discussions

Help/FAQs
A screenshot of a poll in progess with bar chart, the question asked is What topics should we discuss more on the portal, click to take the poll.

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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.



Links to our discussions on:

#Ukraine
#RecentlyDiagnosed

#RareAdults

#CentralNervousSystemDisroders

#Equity Diversity in Rare
#FinancialBurden of Rare

#Getting to a Genetic Dx

#RareStoryTelling


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Recent Shared Files List

  • RE: 5 things we learned from Reena Kartha PhD in her ...

    By: Daniel Defabio 3 months ago
    Posted in: Popular on RARE Portal

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Global Genes Tweets

Global Genes RARE Daily

  • RARE Global Advocacy Alliance Member Spotlight: Karen Jones

    19 hours ago
    Organization Name: wAIHA Warriors Disease Affiliation: Autoimmune Disorders Mission:To alleviate suffering and the socioeconomic impact of wAIHA through fostering and facilitating collaboration in the areas of education, public awareness, research, and patient engagement. What led you to the rare disease community? I was diagnosed with warm Autoimmune Hemolytic Anemia in 2019 and desperate for information. The post RARE Global Advocacy Alliance Member Spotlight: Karen Jones appeared first on Global Genes .

  • ReCode Raises $120 Million to Expand LNP Delivery Platform and Diversify Pipeline

    21 hours ago
    Rare Daily Staff Genetic medicines focused biotech ReCode Therapeutics raised $120 million in a new financing, bringing the total raised in its series B funding to $200 million, which it will use to expand its next-generation lipid nanoparticle drug delivery platform and pipeline of mRNA and gene correction medicines into the clinic. New investors Leaps The post ReCode Raises $120 Million to Expand LNP Delivery Platform and Diversify Pipeline appeared first on Global Genes .

  • Catalyst Prepares to Liquidate, Will Distribute Cash to Stockholders

    21 hours ago
    Rare Daily Staff After significant downsizing, selling certain assets, and dealing with an activist shareholder lawsuit, Catalyst Biosciences said it is preparing to liquidate and distribute cash to the company’s stockholders through one or more distributions. Catalyst’s Board of Directors intends to maximize the size of the total distribution after satisfying or reserving for obligations, The post Catalyst Prepares to Liquidate, Will Distribute Cash to Stockholders appeared first on Global Genes .
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