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SETBP1 Society
  • About Us
    • Faces of SETBP1
    • Our Mission
    • Board of Directors
    • Medical & Scientific Advisory Board
    • Volunteers
    • Partners
  • For Families
    • Newly Diagnosed
    • SETBP1 Society Contact Registry
    • Common Questions
    • SETBP1 Community Map
    • Understanding SETBP1 Science
    • Research Opportunities
    • Doctors Studying SETBP1-HD
    • State Waivers
    • Get Involved
  • Resources
    • Newsletters
    • Videos
  • Research
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Archive for January 24th, 2020

Day: January 24, 2020

Million Dollar Bike Ride – Join our SETBP1 Strong Team

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Million Dollar Bike Ride – Join our SETBP1 Strong Team

by haley / On January 24, 2020Posted in Uncategorized

SETBP1 Society and the University of Pennsylvania Orphan Disease Center invite you to participate in the Million Dollar Bike Ride on Saturday, June 13, 2020 to raise money for research in rare diseases, including SETBP1 disorder. 100% of registration and fundraising money will go towards SETBP1 research! Not only that, but the Orphan Disease Center […]

What is SETBP1?

SETBP1 haploinsufficiency disorder is a very rare disorder that is the result of a loss-of-function of one copy of the SETBP1 gene and causes a spectrum of symptoms ranging from absent speech to expressive language delays, mild-severe intellectual disability, autistic-traits or autism, developmental delays and ADHD.

Read more >
SETBP1 Haploinsufficiency Disorder guide >

GIVING

Please consider making a gift to SETBP1 Society with the PayPal button below to fund research into SETBP1 haploinsufficiency disorder.

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To find out more about our organization, email us at info@setbp1.org.

© SETBP1 Society - P.O. Box 301584 Austin, TX 78703 - 512-522-8072 - SETBP1 Society is a not-for-profit 501(c)(3) organization. Our federal tax ID number is 82-0891558.
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