"WAGR Awareness Day" is one day a year dedicated to increasing international understanding of:
What WAGR syndrome is
What it means to love someone with WAGR syndrome
How people with WAGR syndrome play a vital role in our lives, our schools, and in our communities
WAGR Awareness Day is also the IWSA's largest fundraiser of the year. This year, donations are even more crucial than ever before. With COVID-19 interfering with all of the IWSA's planned
fundraisers, WAGR Awareness Day is the opportunity for everyone to show their support and generosity.
The first WAGR Awareness Day was held on November 13, 2017. Since then, this annual event has continued to grow.
When is WAGR Awareness Day?
WAGR syndrome is caused by a genetic deletion that involves Chromosome 11p13 . All individuals with WAGR syndrome share a common segment of deleted genes that includes the WT1 (Wilms
tumor) gene, and the PAX6 (Aniridia) gene, as well as the genes that lie between these two.
In recognition of the location of this genetic deletion, WAGR Awareness Day is celebrated each year on November 13th.
Facts About WAGR Syndrome
A disorder is considered "rare" if it affects fewer than 200,000 people in the US (or 1 in 2,000 people in Europe). WAGR syndrome affects fewer than 500
people worldwide and is considered an "ultra-rare" disorder
Rare disorders like WAGR syndrome are important because they are key to unlocking the mysteries of more common conditions. For example: People with WAGR syndrome often have obesity caused
by a mutation in the BDNF gene. Studying this gene could help lead to new treatments for obesity
50% of children with WAGR syndrome develop Wilms tumor, a type of cancer of the kidney, usually by the age of 3
Virtually all children with WAGR syndrome are born with Aniridia, a condition in which there is no iris (the colored part) in the eye. Most people with Aniridia have some vision,
but have a high risk for conditions like cataracts, glaucoma, and other eye problems that can cause blindness
Chronic kidney failure occurs in up to 60% of people with WAGR syndrome. Early diagnosis and prompt treatment are critical, and can delay the need for dialysis or kidney
50-70% of people with WAGR syndrome have disorders of movement or muscle tone
WAGR Awareness Day is a unique opportunity to share information about WAGR syndrome and how the IWSA supports individuals and families affected by the rare disorder. This is a great way to
show your support--encourage family members, friends, coworkers, and others in your community to donate to the IWSA.
Tell Your IWSA Story
One of the best ways you can participate is by sharing how WAGR syndrome and the IWSA has impacted your journey. Your community will be most impacted by hearing directly from
The "slogan" for WAGR Awareness Day 2021 is "our kids are one in a million." A great way to personalize your message is by including a photo of your child holding the 2021 sign.
You can easily download and print this file below (available in multiple languages, name and country can be written into the middle).
Help make it easier for your community to donate to the IWSA by creating your own Facebook fundraiser. It is very easy set up and your community will feel great knowing they are
supporting YOU through their IWSA contributions!
Share IWSA Posts
The IWSA will be sharing information throughout the WAGR Awareness Day on the public Facebook and Instagram pages. Please follow and share these posts with your networks!
Why Support the IWSA
Video - How the IWSA Helps Families
Better medical care. Powerful research. Family support that makes a real and lasting difference in the lives of kids and adults with WAGR syndrome.
When you support the IWSA, you make ALL of these happen!