The Global Genes Project today announced the development of the RARE Meetups™ program.  The purpose of RARE Meetups™ is to connect people who are dealing with rare and genetic diseases in their local communities.  These meetings are disease agnostic – meaning it doesn’t matter what disease you are affiliated with.  There is a tremendous amount of information, insight, knowledge and support that can be shared by people fighting rare diseases.

It’s about coming together as a community, regardless of disease, sharing experiences and knowledge to help provide support! — Nicole Boice, Global Genes Project

The problem many rare disease communities face is that they may be connected globally to a network of few, however,  they don’t always have the opportunity to connect with others in their locally community.   The disease connection is critical on so many levels, but so is connecting at home.  There are many unique challenges that families with chronic conditions face within their own Cities and States —  finding qualified medical professionals, getting feedback on care, reimbursement and insurance issues, dealing with the educational system, etc. The connection for many includes the need for help, information and support on a daily basis.

Global Genes and its patient advocacy community continues to work together to develop programs that are meaningful, impactful and that fill a void that so often happens when part of these ultra-rare communities.

This new program is currently being developed and by parent advocacy leaders around the world.

 

7 thoughts on “RARE Meetups™ – Connect Locally”

  1. Anonymous says:

    Hello! I just registered and wanted to say that I’d be interested in any meet up near New England (not just my home state) finances, medical drama depending of course…
    Kristen Davis
    CLOVES Syndrome Community
    http://www.clovessyndrome.org

  2. Jenn Galloy says:

    I live in a suburb of Chicago and would love to connect locally if possible

  3. Heather Earley says:

    We would love to help make that happen! Please click on the following link: /rare-meetups/ and there should be a meet-ups box to click on where a form will pop-up. There you will be able to fill out your information, which will be sent to the director of that initiative. The RARE Meet-ups manager will then put you in touch with individuals who can work together with you for a local meeting.

    – The Global Genes Team

  4. Shannon Rowan says:

    Hi, I live in a Chicago suburb as well and would to connect with you.

  5. Stacey says:

    Hi my name is Stacey I have Tarlov cysts disease I would like to meet also however the webinar is probably the best for me. I live in St George Utah about 2 hours from Las Vegas Nevada. thanks for everything you all do

  6. Shannon Rowan says:

    Hi Jenn,

    I was wondering what Chicago suburb you live in? I am in St. Charles. I am working on a fundraiser for Feb. 28th and would love to get other people in the rare disease community involved.

  7. Amanda says:

    I also live in the NW suburbs of Chicago and would love to connect!

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