Welcome to the online home of the International WAGR Syndrome Association!
“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”
The first official Rare Disease Day was in 2008 on the “rarest day of the year,” February 29th.EURODIS was responsible for the first Rare Disease Day which yielded the participation for 18 countries.In 2009, NORD (National Organization of Rare Diseases) joined forces with EURODIS to ensure Rare Disease Day became a global initiative to raise awareness of the importance of Rare Diseases.
In 2014, 84 countries participated in Rare Disease Day.It is by far the largest patient driven rare disease campaign in existence and falls either on February 28th or, if it’s a leap year, February 29th.
The International WAGR Syndrome Association continues to grow its participation in Rare Disease Day.We’ve had members who have participated in countries all over the world by posting pictures to raise awareness, partaking in state events in their respective states of residence, being the driving force behind state and country recognition of the Rare Disease Day, and promoting Rare Disease Day through social media.
Rare Disease Day 2015 falls on a Saturday, so events may be taking place all week long leading up to the 28th of February.For more information on Rare Disease Day, you may visit http://www.rarediseaseday.org/ .
As NORD and EURODIS continue to release promotional materials for Rare Disease Day 2015, we will bring you updated news and information.But the first step in celebrating Rare Disease Day is to identify how rare disease has impacted your life in a personal way.You can share YOUR story at http://www.rarediseaseday.org/tell-your-story/.
SAVE THE DATE!!!!
WAGR Weekend 2015
July 24th and 25th, 2015
San Diego, CA
A Note about the WAGR Study at the National Institute of Health....
Many of us WAGR families have had the pleasure of working with Dr Joan Han from the National Institutes of Health in Bethesda, Maryland. During the past several years, Dr Han and NIH research team members have worked with several dozen WAGR families and the resulting information from these studies continues to help our families to navigate and manage the often unknown and frustrating medical world of WAGR/11p deletion syndrome.
Dr Han recently announced that she will be leaving the NIH, at the end of June 2014, to continue her career and research at the Bonheur Children's Hospital in Memphis, Tennessee.
Below is the new contact information for Dr Han. This information is effective immediately as Joan is already making the transition. As in the past, please feel free to contact her if you have any questions about future research or specific concerns about your WAGR family member's health, etc.
Joan C Han, MD
Director, Pediatric Obesity Program
Associate Professor, Division of Pediatric Endocrinology
Department of Pediatrics, University of Tennessee Health Science Center
Le Bonheur Children's Hospital
50 North Dunlap Street, Room 476R, Research Building
As an ultra small rare diseases organization, the International WAGR Syndrome Association recognizes just how fortunate we have been to have the incredible NIH research studies focusing on WAGR/11p deletion syndrome. Furthermore, our relationship with Dr Han has been priceless during the past several years, and we are grateful for her professionalism, kindness, and commitment to our WAGR families. We are extremely pleased to know that Dr Han's research will not end with her separation from the NIH.
According to Dr Han, "I am working on getting all the clinical protocols transferred to Le Bonheur/UTHSC so that studies can proceed seamlessly."
We look forward to providing additional information about WAGR research once Dr Han is settled in Memphis and more details are available.
In the meantime, please feel free to contact Dr Han directly if the need arises.
IWSA Board Chair (and WAGR mom to Amy, 18, Maryland)
What Is WAGR Syndrome?
WAGR Syndrome is a very rare disorder. There are less than a few hundred cases reported in the medical literature.
“WAGR” is an acronym for the most common features of this disorder. Wilms' Tumor,Aniridia, Genito-Urinary Anomalies, R- developmental delay/s People with WAGR Syndrome have many things in common, but they are also individuals. It is important to remember that a given individual with WAGR syndrome may or may not have or develop all of the conditions listed.
Medical Disclaimer: The information contained on this web site is presented for your information. Nothing contained on this web site should be construed nor is intended to be used for medical diagnosis. Consult a physician in the event of a medical problem.
Rare Disease Europe link
Genetic Alliance link
National Organization for Rare Disorders
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