The Wadsworth Center, March 7-10, NYC at, was host to the Genetic Diseases In Children Conference.  My recommendation . . . make it to the meeting next year!  Here’s why!

Most conferences discuss theories, postulate and talk a lot about ‘what can and should be done’ about a topic.  The GDC Conference created an agenda that successfully worked to change that.  The producers of this event wanted actionable outcomes; wanted patients, caregivers, industry and non-profits to walk away with ideas, plans of action and connections.  And guess what, I believe that they accomplished just that!

Compelling Agenda:

The agenda was well put together, making it difficult to choose where to be when.  If I were to say anything negative it was that there wasn’t enough time to sit in on enough of the great discussions.  They created 5 broad tracks that included; Reaching an early diagnosis,  Sharing family experiences, Optimizing care and coordination of services, Children living with genetic disorders (meeting their needs) and Accelerating Research.  Within those 5 broad tracks were a multitude of topical discussions that were very relevant for the variety of attendees that joined.  Click here to view the agenda in its entirety https://www.wadsworth.org/events/genetics/

I had the good fortune of joining a panel discussion led by James O’Leary, Chief Innovation Officer of Genetic Alliance.  We gathered to discuss the topic – ‘The Importance of Family Support Programs and Social Networks.’  My panel also included Mr. Jamie Heywood, Founder, PatientsLikeMe and Ms. Sarah Goshman, Asst. Director of Jacob’s Cure. We shared how social networks have advanced connections and communications within the rare disease community.  We also discussed what we saw working and what opportunities lay ahead.  Sarah Goshman did a great job sharing details around specific social media campaigns, whey they worked, and when organizations should embark on these types of programs.

The takeaway from this session – No social media efforts will work without ‘purpose’ and a clear ‘agenda’.   Need to know what you want to accomplish and why.

Another important feature of this event was the opportunity for parents to network with one another. We heard heart-wrenching please from parents of children with new diagnoses, and from many parents whose children have ultra-rare diseases with little to no support.  In particular, xxyy, 9Q deletion, 10Q deletion, 15Q deletion to name a few .  We talked with some of these parents individually about the value in connecting with other families, regardless of disease, and what resources were available for them to take advantage of.  Many of these families were immediately embraced by many different patient groups, support organizations and other parents, helping guide and share information that could be valuable.  Even a hug, knowing that they are not alone made the trip worth the effort.

The bottom line . . . you need to attend this event next year!  With more parent advocates and patient groups contributing, this is certain to become the meeting place for collaboration and to connect.

The rare disease community needs more events like this. . . perhaps we can convince them to bring this meeting west in the year’s to come!

Nicole Boice

Children’s Rare Disease Network

Global Genes Project

nicoleb@rareproject.org

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