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2018 Top-Rated Nonprofit

ASXL Rare Research Endowment Foundation

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Nonprofit Overview

Causes: Health, Medical Research

Mission: Drive evidence-based research and information distribution that will enable ASXL-impacted children to have an improved quality of life. Prevent: Improve medical and overall management of care through early identification of health risks and optimization of treatments Improve: Use evidence-based research to justify medical needs, therapies, services, and equipment needs. Inform: Enable caregivers and providers to be effective advocates

Target demographics: individuals with congential ASXL syndromes

Geographic areas served: all over the world

Programs: basic & clinical research grants and ASXL conferences

Community Stories

11 Stories from Volunteers, Donors & Supporters

Sophie F.

Client Served

Rating: 5

My daughter have the mutation ASXL3 one . It is the only association do a recherche about it.

Vonnie Iverson S.

Client Served

Rating: 5

The ARRE Foundation means so much to our family. When my granddaughter was born, no one knew anything about Bohring-Opitz Syndrome. The ARRE Foundation has given us hope! It funds true research to improve the lives of our children.

1 Julie Chandler L.

Client Served

Rating: 5

We went to the conference sponsored by ARRE and it was wonderful. For the first time we got to hear doctors that are studying these rare diseases and connect with other parents and families. They are doing a great job!

1 Jerry S.3

Volunteer

Rating: 5

Great work being done To raise awareness within the medical community about ASXL syndromes. Only about 300 diagnosed in the world.

2 Gina S.2

General Member of the Public

Rating: 5

Thank you to the ASXL foundation for giving well needed attention to these rare syndromes.

1 Sheri B.2

Volunteer

Rating: 5

ARRE brings research and families together! My family and I were so proud to be apart of ARRE's first annual conference this past July. It was an event that involved learning from top medical geneticists about current research, bio-banking, and meeting other families that share our experiences. This is a one of kind nonprofit that focuses on improving the lives of our chronically ill children. Thank you for all you do, ARRE.

1 Michele P.2

General Member of the Public

Rating: 5

We are thankful for non-profits like ASXL, we hope that with continued research we will know more about how we can help our little ones!
Rare diseases, like Shashi-Pena Syndrome-ASXL2 need LOTS of TLC! And of course "ALL" rare disease need TLC!

1

Volunteer

Rating: 5

The amount of achievements this organization has had in less than a year since its beginning is nothing short of outstanding! I am so proud to be part of its journey!

1

Volunteer

Rating: 5

ARRE does so much to help people affected by the ultra-rare ASXL syndromes! They help families connect, help caregivers be better advocates and help bring much-needed awareness to medical professionals.

1 Suzanne D.2

Volunteer

Rating: 5

The Arre Foundation is so important for families with children with an ASXL mutation, because they bring researchers and so knowledge together which is very important to understand more about these syndroms! The first conference in July 2018 was a very big succes and brought families from all over the world toghether. Such a meet-up is of great value for all the people who are a part of the children with these rare mutation, because so little is told in literature and this way we can all learn from eachother! Therefore it’s so important that this Foundation excists, so if you are thinking about foundraising, please think about the Arre Foundation!

Thank you!

Suzanne Driessen
Coen’s (Bohring Opitz Syndrome) mom.

1

Volunteer

Rating: 5

Finally a non profit organisation who is really dedicated to research. The ultra rare ASXL syndromes (Bohring-Opitz Syndrome-ASXL1, Shashi-Pena Syndrome-ASXL2 and Bainbridge-Ropers Syndrome-ASXL3) are under diagnosed and there is still inadequate knowledge and resources about causes, symptoms, quality of life and treatments. Research is desperately needed!