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ASXL Rare Research Endowment Foundation
ASXL Rare Research Endowment Foundation
ASXL syndromes
Newly diagnosed
Syndrome overview
Bohring-Opitz Syndrome (ASXL1)
Shashi-Pena Syndrome (ASXL2)
Bainbridge-Ropers Syndrome (ASXL3)
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ASXL Care Directory
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ASXL-Related Disorders Natural History Study
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ASXL Rare Research Endowment Foundation
ASXL Rare Research Endowment Foundation
ASXL syndromes
Newly diagnosed
Syndrome overview
Bohring-Opitz Syndrome (ASXL1)
Shashi-Pena Syndrome (ASXL2)
Bainbridge-Ropers Syndrome (ASXL3)
ASXL Resource Library
ASXL Care Directory
ASXL clinics
Research
Enroll in research
Published research
ASXL-Related Disorders Natural History Study
Research we fund
Research Roadmap
Events
ASXL Research Symposium and Family Conference
Webinars and events
Get involved
Ways to give
Volunteer
Fundraise
Giving Tuesday
Awareness days
About us
Who we are
Leadership
Annual report
Partners
News
Join our team
Undiagnosed?
Donate
Folder: ASXL syndromes
Back
Newly diagnosed
Syndrome overview
Bohring-Opitz Syndrome (ASXL1)
Shashi-Pena Syndrome (ASXL2)
Bainbridge-Ropers Syndrome (ASXL3)
ASXL Resource Library
ASXL Care Directory
ASXL clinics
Folder: Research
Back
Enroll in research
Published research
ASXL-Related Disorders Natural History Study
Research we fund
Research Roadmap
Folder: Events
Back
ASXL Research Symposium and Family Conference
Webinars and events
Folder: Get involved
Back
Ways to give
Volunteer
Fundraise
Giving Tuesday
Awareness days
Folder: About us
Back
Who we are
Leadership
Annual report
Partners
News
Join our team
Undiagnosed?
Donate
Register now for “Ask-a-Researcher” with Dr. Rosanna Weksberg
Announcements and updates Amanda Johnson 9/1/21 Announcements and updates Amanda Johnson 9/1/21

Register now for “Ask-a-Researcher” with Dr. Rosanna Weksberg

Join Dr. Rosanna Weksberg and her team to learn about their study of the patterns of DNA methylation, or signatures, associated with changes in the ASXL genes.

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ARRE Foundation shares family survey results
Announcements and updates Amanda Johnson 3/15/21 Announcements and updates Amanda Johnson 3/15/21

ARRE Foundation shares family survey results

The ARRE Foundation conducted a survey of families from February 25 to March 8, 2021. Over 80 families from 7 countries responded to the survey. Feedback from the survey will help inform the ARRE Foundation’s 2021-2023 strategic plan.

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ARRE Foundation appoints Amanda Johnson as Chief Development Officer
Announcements and updates Laura Badmaev 1/26/21 Announcements and updates Laura Badmaev 1/26/21

ARRE Foundation appoints Amanda Johnson as Chief Development Officer

Johnson will serve as the organization’s first staff member and will oversee fundraising, marketing and communications, and outreach events to support the ARRE Foundation’s mission of advancing research and improving quality of life for ASXL-impacted children.

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2018 Inaugural ASXL Research Symposium - a GREAT success!
Announcements and updates Amanda Johnson 8/17/18 Announcements and updates Amanda Johnson 8/17/18

2018 Inaugural ASXL Research Symposium - a GREAT success!

At the first-ever ASXL Research Symposium, physicians, researchers, providers, and families from around the world gathered at the UCLA Luskin Conference Center to discuss scientific and clinical research of ASXL syndromes and brainstorm ideas for the ARRE Foundation research strategy.

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ASXL Rare Research Endowment Foundation

P.O. Box 102
Gorham, ME 04038 U.S.A.
info@arrefoundation.org

The ASXL Rare Research Endowment Foundation is recognized in the United States as a 501(c)3 nonprofit organization. Donations are tax deductible to the fullest extent of the law. Tax ID: 82-3890665

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