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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

31 Stories from Volunteers, Donors & Supporters

2 Andrea H.1

Client Served

Rating: 5

This organization has familiarized me with the unfamiliar, connected me with others when I felt alone, answered my questions when I had none, and provided me hope when I felt hopeless. My son was born with WAGR 12-31-12 and when we were given the news of this ultra rare syndrome, I thought life was over, but then I was introduced to a this organization I realized my life had just began. Here is my little boy praying at church and we are not only blessed by him, but also this wonderful organization which is an extension of our family.

Andrea D.4

Client Served

Rating: 5

I have no words to describe the help this association has given me with my son! The love...the support...when I’m feeling lonely and desperate I know there’s always somewhere I can turn!!!

Client Served

Rating: 5

This organization has been instrumental in helping me to learn more about my daughter's genetic disorder. They offer support in a way that helps me to feel less overwhelmed and more empowered as a parent. The people involved and in the community are like family and have blessed the lives of my family.

Aaron C.2

Client Served

Rating: 5

Amazing, hard working association raising awareness for the very rare medical condition ‘WAGR syndrome’. Please keep up the hard work, you are extremely important and are the voice for our kids. Thank you

1 Heidi L.1

Client Served

Rating: 5

The international WAGR syndrome Association has been my rock whilst trying to parent my daughter. Parenting is a tough gig for all of us. Parenting a special needs child is even tougher. Add to that a very very rare condition and some really complex medical and behavioural issues and you have this woman's worst nightmare! Thanks to the people at the IWSA I can face not only each hurdle as it arises, but I can face each day as it unfolds with it's own unique challenges.

Client Served

Rating: 5

When I first had my daughter, I was overwhelmed by all of the aspects of WAGR. This organization not only put me at ease, but made me feel not so alone. They have guided me along the WAGR journey, sharing research findings and and really great advice. I honestly don’t know where I’d be without them.

Catherine M.1

Client Served

Rating: 5

Without this organization I would of been completely isolated to deal with so many diagnosis and deal with the rollercoaster of WAGR on my own. This is my extended family with support and without them our children multiple diagnosis. Would of never been studied and or changed in medical history. My son is healthy as he could be because the efforts this organization has made with the medical community.

Jamie R.1

Client Served

Rating: 5

IWSA has been a life saver group to our family. We have a 14 year old child with WAGR 11p deletion. With all the medical complications our child has endured, this group has helped guide us through the toughest journeys over the past 14 years. The emotional and educational support we have received over the years is the biggest gift we could have ever received. We are so blessed to be part of the IWSA group.

1 Melissa K.1

Client Served

Rating: 5

When my daughter was first diagnosed with WAGR syndrome our world came crashing down and we felt so alone... I reached out to the IWSA and they helped our new world not feel so scary. The support from the IWSA has been unlike anything I've ever experienced and our family is beyond grateful. From the beginning the IWSA and its members have been a second family to us and because of them we will never feel alone. We are so proud of all that the IWSA accomplishes and overwhelmed with love. Thank you IWSA!

Client Served

Rating: 5

The IWSA isn't just a charity, it's a second family to all of the individuals and their loved ones affected by this very rare syndrome. WAGR is an acronym, not all of those diagnosed will present all four aspects. My son Bryan has them all and more. Through the hard work and many hours of fund raising, meetings, website creation and research, our "family" has come a long way towards helping the newly diagnosed. I can honestly say that Bryan's unexpected progress, both medical and physical can be attributed to the IWSA. It is the "go to" resource for families, doctors and all who care for our special loved ones!

1 Shirley M.1

Client Served

Rating: 5

I'm the mother of an adult son with WAGR. The IWSA has been extremely helpful to me while facing the challenges of this rare syndrome. There wasn't much information around about WAGR while my son was growing up, so I'm thankful to have such a proactive, informative, and invaluable organization for much needed support now. My son and I had never even met another person with WAGR until we attended a yearly family get together, thanks to IWSA and the amazing people who advocate for our loved ones through the association. It also warms my heart that, with this organization, no other WAGR child or family member will have to worry and wonder alone about what will come next and what treatment options are available. IWSA's efforts with research, sharing the information, and connecting families is a much needed lifeline.

2

Client Served

Rating: 5

My daughter, Emilia, was diagnosed with Aniridia at 1 day old, 5 weeks later she was then diagnosed with WAGR syndrome. Myself and my husband felt incredibly lonely and lost at this time. We found the IWSA by searching WAGR syndrome in google and it was the best thing we could have stumbled across. We immediately became part of the Facebook group and were surrounded by information, support and positivity. Just in the first day of being part of this group we discovered 5 other families in the UK with the syndrome (after being told there were less than 450 diagnosed cases in the world I wasn’t expecting so many!) We became part of a new family and often share achievements and concerns. The support and information is invaluable. Having the IWSA is fantastic and I appreciate it more and more everyday.

2 Linda Van de S.

Client Served

Rating: 5

A few months after our son was born he was diagnosed with WAGR syndrome. This was in October 2016. Doctor didn't have any experience with this syndrome as it is very rare. There you are as first time parents: mixed feelings, loads of questions and concerns... I found the IWSA website with information about this condition. Not only did I find a website. I found a support group and most important I found an amazing group of parents and children who are also on a WAGR journey. A group who understands your frustrations and fears but also shares in your joy during achievements of our little one. Through this organisation I know what to look out for, how to guide doctors in their check ups. Many useful and amazing have happened through research of the IWSA and more wonderful things are about to happen. IWSA never sleeps when it comes to caring for our children and trying to give them a comfortable life! In the IWSA I truly found a family who is with us on this unknown journey.

Linda van de Sande, Belgium

2 Kateryna S.1

Client Served

Rating: 5

This is such a great organization. WAGR such a rear syndrom. Majority of doctors have no information on it. That's the only place you can find it. IWSA is your family, your doctor and your friend. Thank you for what you do.

2 Kathy Bell C.

Client Served

Rating: 5

When we first found out our daughter had WAGR, the first thing we did was start searching the internet. We found the IWSA and are so happy we did. They are a wonderful and supportive group and I don't know where we would be without their guidance.

1

Client Served

Rating: 5

Only a very small organisation but so well run, so helpful for the people/families living with WAGR Syndrome that would otherwise have very little help and information on the syndrome provided by their respective countries health service due to its rarity.

4

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.

4

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.

4

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.