|
Big News: The MedQuest Goes ONLINE!
Some of the members of this group may remember "MedQuest," a questionnaire we mailed out in 2002 to help answer questions like "How many people with WAGR syndrome have (name a condition)?"
The information we collected answered a whole lot more than that. It revealed for the first time that WAGR syndrome often involves more than just W, A, G, and R. It also helped us build a set of guidelines for medical care that have now become the standard. In other words, we discovered that a small group of determined parents can change the world for their children.
Now it's time to do it again. Since that first MedQuest, our kids have grown, the group has grown a lot, and technology has grown like crazy.
So this time, we're doing the MedQuest just one section at a time, and with a confidential, fast and easy ***online*** format.
The first section of the new MedQuest is called "WAGR syndrome: The Kidney and Urinary Tract" and it is now open. We hope that everyone will take a few moments and fill out this survey.
To obtain the link for our online survey please contact:
Kelly Trout, RN, BSN - IWSA Health Consultant
kellytrout@sbcglobal.net
Catherine Luis - IWSA President
catherineluis@msn.com
Tammie Hefty - IWSA Vice President
tammiejo@mhtc.net
|
|
