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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

6 Stories from Volunteers, Donors & Supporters

2 Shanna Landry B.

General Member of the Public

Rating: 5

It's been 17 wonderful years since I found the International WAGR Syndrome Association. They have been my greatest support system ever since the day I've taken my son home from the hospital. From the first terrifying moment my son was diagnosed with cancer, throughout this amazing journey of his life, IWSA has been there for my family. The IWSA is the best resource concerning this rare genetic disorder, WAGR Syndrome, because all of its members have been touched by it. THANK YOU IWSA and all of its families for the wealth of information, incouragement, support, and for helping me stay on top of Braxton's medical needs. My son has flourished all these years and continues to thrive!!!

General Member of the Public

Rating: 5

16 years ago our Grandaughter was born with a very rare syndrome. The pediatrician didn't know much about it either and read a short paragraph out of the medical journal. I started searching the internet and came upon IWSA. They were our source of all our information, and taught my granddaughters doctor all about it. Besides the wealth of information, they became our cheer warriors, our prayer warriors and go to warriors. Today our Alyvia is amazing us all and we couldn't be more proud of her and this group, that has been by our sides watching her grow.

1 Michelle C.2

General Member of the Public

Rating: 5

Hi!! We are from the UK, and this organisation has helped us through one of the toughest times in our lives. Our 1st child, a little girl called Grace, was born on 18th september 2014 with WAGR Syndrome. With the help of the amazing people from this organisation, we got some much needed information, answers and support that we needed, and for that, we will be forever grateful. Thank you

1 Deanna M.1

General Member of the Public

Rating: 5

This association has been completely amazing with helping me learn and understand the health and difficulties we may face. They are quick to answer any questions and our extremely supportive!!

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

General Member of the Public

Rating: 5

The Wagr Syndrome Association was there when my granddaughter was born. The members have been lights in the darkness for my daughter and son-in-law as they navigate new territory. The medical research that the members of the group are participating in will lead to many new advancements in dealing with whilms tumor and obesity. The members always seem to be there for each other and being small in number they are big on support. It is difficult being a little known genetic disorder to get the same backing as the more well known deseases but the group perseveres and get itself out here when it counts. It's a dedicated, positive and hardworking group that deserves our support.