I Cannot Tell a Lie...

WEGO Health is asking me to lie today.  I'm really good at making up lies quickly and pulling it off, but I'm not good at long-term lying.  Lies eat away at me and torment me as long as I keep them in.   So, rather than telling you some truths and lies and having you figure out which one is which about ME, I'll tell them about WAGR/11p Deletion Syndrome and you can determine which is truth and which is a lie.  I'll even send you to the website where you can find the answers.  (A.K.A. the Teacher's Edition of a textbook)

• WAGR/11p Deletion Syndrome is SO rare, that there are only a few hundred documented cases in the WORLD.  http://www.wagr.org/images/WAGR_Syndrome_Chapter_59_revised_upload_5_17_11.pdf  When you consider that "in the United States, the Rare Diseases Act of 2002 defines rare disease strictly as "any disease or condition that affects less than 200,000 persons in the United States," or about 1 in 1,500 people, then you might say WAGR/11p Deletion is "uber-rare". 

• WAGR/11p Deletion Syndrome is named for it's characteristics that manifest in people with the syndrome:
• W:  Wilms Tumor
• A:  Aniridia
• G:  Genital Abnormalities
• R:  Range of Developmental Delays  

People with WAGR show only these symptoms and don't have any other conditions to manage.  (Remember, I had to include a lie....)  http://www.wagr.org/guideforphysicians.html

• The International WAGR Syndrome Association holds an annual event called WAGR Weekend during which families with WAGR come from all around the United States, and the world, to spend a weekend together and have peace in knowing that they are not alone.  WAGR Weekend is a life changing event for many families.  http://www.wagr.org/wagrweekendevents.html

• In 2011, the IWSA announced a name change for WAGR Syndrome, and advocated calling it WAGR/11p Deletion Syndrome.  Much of the recent research has revealed that WAGR/11p Deletion involves a wider range of deletions on the 11th chromosome, so the broader name WAGR/11p Deletion more accurately depicts what is happening with the people who have it.  http://www.wagr.org/iwsanamechangenotice.html  Even more will be learned about WAGR/11p Deletion (jeepers, it was easier to type when it was just WAGR :) ) with the acceptance of the IWSA into the Global Rare Disease Registry which should launch within the next year.   "The goal of the GRDR is to create a resource of de-identified patient information from rare disease registries to help facilitate research and clinical trials; analyses of data across many disorders; and ultimately drug and therapies development for millions of rare disease patients. Long-term goals involve development of open-science principles and a sustainable resource funded and supported by private-public partnerships."  (accessed at  http://www.wagr.org/latestiwsanews.html on 11/18/2013).

You have successfully made it through my little WAGR/11p Deletion tutorial!  While I'm not going to give you a pop quiz to see if you retained the information, I will tell you that you can continue to learn more about WAGR/11p Deletion by signing up to get our monthly electronic newsletter, Mini-WINGS. 

 



Scan this code with your
smart phone to sign up for the
Mini-WINGS newsletter from the
IWSA

Or click here to fill out our sign up form:  I'd like to receive the Mini-WINGS Newsletter!