Thanks to all who have taken the time to visit our website. There has been so much that has transpired over the last few months. Most recently, we have been busy planning our first annual conference, which will be held in Omaha, Nebraska July 31 – August 2, 2011. This is a great opportunity for families to connect with doctors and scientists who have devoted their professional lives to helping children diagnosed with Zellweger Spectrum Disorders. Additionally, families have the opportunity to meet others faced with similar challenges and embrace a community of families that “get it”.
If you are a parent of a child that wants to come to the conference, but it seems impossible for one reason or another, please contact me! I can be reached by phone at 402-429-5650 or at firstname.lastname@example.org.
The website is a work in progress, and we are striving to continue to add content to make it a primary resource for families and professionals. If you are a professional passionate about children with PBDs or parent or family member impacted by this disorder, please feel free to leave a comment. We appreciate all the support to help make GFPD a reality.
Shannon Butalla, President