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International Wagr Syndrome Association

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Nonprofit Overview

Causes: Birth Defects & Genetic Diseases, Birth Defects & Genetic Diseases Research, Eye Diseases, Blindness & Vision Impairments, Health

Mission: The mission of the IWSA is to promote international knowledge and awareness of WAGR syndrome and its complications and treatments, to stimulate research and to reach out to those affected by WAGR syndrome in an effort to improve their lives.

Community Stories

9 Stories from Volunteers, Donors & Supporters

1

Volunteer

Rating: 5

This wonderful organization helps us through life. With our son with a rare genetic disorder we have to face many challenges, a range from daily life to specific doctor appointments. Without the help and knowledge of IWSA we would be alone in this jungle.

1 Chantal D.

Volunteer

Rating: 5

From day 1 after the diagnosis they always proactively helped us! They provided us and our medical specialists all the necessary information. In the Netherlands we needed more information than available. The support for us as wagr family is really great! I love the IWSA
Feels like family.❤ recently I decided to be a volunteer and give other families the support we received from IWSA.

1

Volunteer

Rating: 5

When my wife and I first found out about our daughters diagnosis we were very overwhelmed with grief and fear of the future. We were also underwhelmed at our limited awareness by our physicians of our daughters syndrome. Thankfully, because of the IWSA, my family feels connected and we were able to get some of the answers we needed. Their website has also greatly assisted us in educating our daughters medical team as well.

1

General Member of the Public

Rating: 5

They have been unbelievably helpful to me and my family. They are always there if we need them

Previous Stories
4

Volunteer

Rating: 5

This charity has helped us so much since our son was diagnosed with wagr syndrome. Without it we would be lost in a sea of unknown terms & symptoms. We would feel so alone

3 errina

Volunteer

Rating: 5

IWSA is a really wonderful group. They support me by giving many usuful knowledge and mentally. I can't imagine how I go through this tough road without IWSA now.

3

Volunteer

Rating: 5

I am continually amazed and inspired by how this group (association) has grown and expanded it's ability to help children with Wagr, and their families, to be informed, connected and stay strong together. God Bless you all. If you were looking for help a place to help your child and yourself not only live with, but thrive with this syndrome, you have come home. You will be welcomed and cared for here.

4

Volunteer

Rating: 5

As a volunteer for this organization, I can vouch for the IWSA's determination to manage its income as carefully, thoughtfully, and transparently as possible. With an all-volunteer staff, negligible overhead, and passionate supporters, all of its resources go directly to programming.

And as a parent whose child has benefited tremendously from everything the IWSA does, I can testify to the fact that this group makes every dollar accomplish life-saving, life-changing things.

4

Volunteer

Rating: 5

The IWSA was my life preserver when I was swimming in fear off what my son's future would be like. Their knowledge of this disorder was a huge help to not only my family, but our doctors too. We have met other parents who deal with what we do day to day and now they are part of our own "family". I would be lost without them!

4 Rhonda S.

Volunteer

Rating: 5

I don't know what I would do without the IWSA. I have learned more about my child by talking and sharing with parents, than I could ever learn from a textbook. We would have NEVER learned about the NIH study without the support of the IWSA. This is a group that I will be forever connected to!