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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-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
Hang on: Glass half full in a COVID world
Family perspectives Laura Badmaev 4/5/20 Family perspectives Laura Badmaev 4/5/20

Hang on: Glass half full in a COVID world

While isolation and uncertainty are new for many people in this new COVID world, they are familiar experiences to many rare disease families like ours.

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Go with the flow: A vacation with special needs
Family perspectives Amanda Johnson 6/13/19 Family perspectives Amanda Johnson 6/13/19

Go with the flow: A vacation with special needs

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Throw out the expectations playbook and visit Wonderland
Family perspectives Laura Badmaev 2/28/19 Family perspectives Laura Badmaev 2/28/19

Throw out the expectations playbook and visit Wonderland

Instead of focusing on all the things that these children cannot do, reposition your mindset to what they enjoy and create inclusive experiences with them.

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Strong marriage
Family perspectives Amanda Johnson 10/1/18 Family perspectives Amanda Johnson 10/1/18

Strong marriage

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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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