Susan Waisbren, PhD, Director
Harvey Levy, MD, Senior Physician in Medicine
Freedom Baird, MS, Media Coordinator
Vera Anastasoaie, BA, Administrator
November 13, 2015
Highlights of new content and services the Consortium has offered in print and online this past year –
Sticking to A Special Diet Without Getting Stuck
This encouraging, 10-page printed guide provides parents with helpful background information and a way to work with their child’s special diet. It contains suggestions for reducing family drama around food, having a “birthday party pitch” to help in different social situations, and helping children build an identity beyond their health condition. The guide was authored by Kayla McGowan, MA, Emerson College with supervision by Susan Waisbren, PhD, Boston Children’s Hospital, Harvard Medical School, and Tim Edgar, PhD, Graduate Program Director for Health Communications at Emerson College. The guide was developed in collaboration with parents of children with metabolic disorders sharing their perspectives, insights, and suggestions.
Archival Media for PKU Documentary
We provided archival video footage of Drs. Asbjörn Fölling, Horst Bickel, and Robert Guthrie to writer André Goerschel, who is producing a documentary about metabolic conditions for German and French Television. Mr. Goerschel was put in contact with us by our colleague Dr. Friedrich K. Trefz , Senior Consultant in Pediatrics in the Division of Inborn Metabolic Diseases at the University Children’s Hospital in Heidelberg, Germany. The documentary, which will air in 2016, will include an interview with Professor Ania Muntau, Head of the Departments of Inborn Errors of Metabolism (IEM) and of Molecular Pediatrics at Haunersches Children’s Hospital, LMU Munich University.
Moving On with Mito is Now Online
We ported our popular Moving On with Mito guide from the print-ready version to an online version. This comprehensive guide offers sections on understanding the biological basics of mitochondrial disorders, achieving life goals including going to college, working, and living independently, and transitioning to adult health care.
Web statistics show that the guide is being read for an average of 5 minutes per visit, indicating that readers are accessing it in-depth.
We adapted the information in our Moving on with Mito guide to create a one-page Metabolic Condition Basics guide for teen and young adult patients with mitochondrial disorders who are transitioning to independent living.
Consortium Web Site Readership
Over the past year 36,471 readers accessed 87,003 pages of content on the Consortium web site. Readers also downloaded PDF versions of online materials 2,923 times. Our readers are from 163 countries with the most coming from the US, UK, India, Canada, Australia and Saudi Arabia. A newly available analytic for the Consortium web site, shown here on the right, indicates that more than a third of readers are accessing the site from phones and tablets. This shift will guide our efforts in the coming year to make the Consortium web site “responsive”, i.e. more readily viewable on a range of devices.
We were pleased to work with Becky Holman and the staff of Hyperion Therapeutics to have our popular UCD Educator’s Guide translated into Spanish print version. Of note are the most common languages that our readers’ browsers are set to. They are, in order: English, German, Brazilian Portuguese, Arabic, Taiwan Chinese, Spanish, Korean, and French.
We continue to get requests from health care providers and scientists around the world to use text and illustrations from the Consortium web sites resources. Requests this past year have come from:
- Cardinal Glennon Children’s Medical Center, St. Louis, MO
- Health Education West Midlands, Birmingham, UK
- Center for PKU, Kennedy Centret, Glostrup, Denmark
- Connecticut Children’s Medical Center, Hartford, CT
- Acta Pediátrica de México, Medical Journal, Mexico City, Mexico