Posted by Ana Daruwalla on March 11, 2019
The Parent Working Group (PWG) has 160 participating members, and we’re always encouraging them keep in touch with each other; to share ideas, experiences and knowledge, to support one another and to communicate openly about issues and opportunities at their local centers. Last year we challenged ourselves to create a resource that would ease the flow of information and inspire these kinds of connections.
In response to this challenge, the parents of the PWG envisioned a member directory – created for parents, by parents. At the Spring 2018 Community Conference, Pam Hunter (University of Iowa Stead Family Children’s Hospital) and I (Ana Daruwalla from Great Ormond Street Hospital in London) volunteered to move the project forward. We prepared a first draft of the directory and brought it with us to the Fall 2018 conference, where we received a lot of positive feedback from other parents and gained another team member (Carrie Ward from CHOC – Children’s Hospital of Orange County in California).
Over the course of several months, our team gathered information for the PWG Directory using a voluntary survey and by email. The PWG Directory was launched in early February 2019 and currently 35 parents have shared their information, including all seven current PWG Co-chairs and Committee Leads. We will be sharing the directory with participating PWG members via the ICN Exchange, direct email and in hardcopy at the Spring 2019 Community Conference.
We are pleased to offer great flexibility to parents wishing to be included in the PWG Directory. If at any time a parent wishes to add, edit, update, or remove their information they can simply email the PWG to make their request. Currently, we plan to update the directory quarterly.
Now that the PWG Directory is here, we hope parents across the PWG will be better able to keep in touch; to connect with one another, and to share seamlessly and steal shamelessly for the betterment of our children and the IBD community as a whole.
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