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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

15 Stories from Volunteers, Donors & Supporters

2

Client Served

Rating: 5

In short, the IWSA have kept me going these last 16 months since my son was born. The knowledge, the experience, the support are all invaluable. Lost without them.

3

Client Served

Rating: 5

The IWSA has helped me to have some really good experiences, I've learned a ton and made a lot of new friends. It has helped me to be healthier with medical information about my condition.

3

Client Served

Rating: 5

IWSA is a fantastic organisation, which has helped support families including my own with information, knowledge support and understanding of such a rare syndrome such as WAGR.

2

Client Served

Rating: 5

The iwsa has helped my family in more ways than I ever will be able to put into words. They are our lifeline.

2

Client Served

Rating: 5

IWSA has been a great help to my family. They are a wealth of knowledge and support!

2

Client Served

Rating: 5

The IWSA has become a lifeline for my husband and I. Our daughter is almost 15 yrs old and we have been involved with IWSA for 5 yrs. The welcoming of this group is beyond a feeling I've ever experienced. We have learned more in the last 5 yrs from our annual gatherings with IWSA families
than we did in the first 10 yrs from the many doctor appts. I'm always impressed with the amount of support each question receives when posted in our Facebook group. We can ask anything and someone will have either experience to offer suggestions or point us in a direction to find help. It's always a bittersweet when I see a new family log into our Facebook group. I'm so happy they found us and my heart aches for their fears regarding their child's future. This group has given me hope for the future, a feeling of acceptance and understanding you can't find outside this group. We have some amazing parents that started IWSA and we are so thankful for the parents that keep stepping up to the Board of Directors to continue to build our closely bonded families.
Written with so much love for the IWSA
The Carlson Family

2

Client Served

Rating: 5

This organization has given me so much support and hope over the rollarcoaster of this past year since my son was diagnosed.

2

Client Served

Rating: 5

The IWSS has been amazing for my family. Offer a great support group, educational information and has very useful information.

4 Jennifer445

Client Served

Rating: 5

With WAGR syndrome being so very rare, IWSA has allowed many families to share stories and ask questions that we may not have felt asking to just anybody. It has given me a shoulder to cry on and many laughs to lighten each day. They don't realize just how much they mean to all of us. Thank you from the bottom of my heart for educating and providing support to me and my family!

3

Client Served

Rating: 5

My 10yo daughter has WAGR syndrome and because she was diagnosed pre-natally I was fortunate to have had the support of the IWSA from day one. Being such a rare syndrome, I've found the knowledge of the board to be invaluable in raising my daughter, both in medical and emotional terms. I doubt anyone could understand this until they've walked in my shoes. Living in Australia we are somewhat isolated, this makes connecting with other families virtually impossible. The IWSA ensures all families are kept "in the loop" at all times regardless of distance, ethnical or language barriers. I find this very comforting as despite our kids all being alike, so too are they all very different, so I am able to connect, share and compare various traits with a multitude of children from around the world. At the age of two when my daughter was in hospital to undergo a partial nephrectomy to remove a tumour, she recieved an unexpected gift from the IWSA which was welcomed with joy at a time when we had little to smile about. To know others who "get it" are thinking of us is so profound. Our family and friends of course were thinking of us too, but I doubt they totally understood exactly how we were feeling. The IWSA did, and always will.