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  • Global Genes Rare Disease Summit 2021!

    Posted by dawn-debois on September 22, 2021 at 7:45 am

    Hello Everyone!

    I just signed up for this year’s Global Genes Rare Disease Summit! It starts on Sunday and runs through Wednesday. It is run on Pacific Time as Global Genes is in California, USA.

    I wanted to make sure you all knew about it because there is so much great information for Rare Disease Patients. I’ve been to it in person and it was life changing. I even met and talked with Mike Porath, founder of The Mighty!

    They had hoped to be an in person conference this year but, well, COVID, so they are once again virtual. I’m all signed up and ready to go.  Please let me know if you sign up as well so I can look for you!

    One of the biggest take aways, aside from many new friends was that so many people fight rare disease battles. So many have overcome unimaginable hurdles. Meeting, listening, hearing their stories gave the group of us that went a new lease on living with LEMS.

    What else do you get from attending?

    • Networking and Meeting other rare disease patients
    • Networking and meeting other rare disease parents and siblings
    • Presentations by speakers who are inspirations in their own rare disease space
    • Trainings on how to start your own rare disease advocacy group
    • And so much more!

    It costs $35 to sign up.

    You can sign up here: https://globalgenes.org/event/patient-summit/

    lori-dunham replied 2 years, 6 months ago 2 Members · 1 Reply
  • 1 Reply
  • lori-dunham

    Member
    September 22, 2021 at 9:05 am

    Thank you Dawn for sharing this information. It looks like a worthwhile use of our time.

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