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Bridging the Gap through the Global Genes Patient Advocacy Summit

Viewpoints
10/19/2018

As a mom of a daughter with a rare disease, Shwachman Diamond Syndrome, I wear or have worn many hats in this rare disease space. I am a mom, guardian, advocate, past president of the non-profit SDS Foundation with all that entailed, and now a member of a for-profit company, TREND Community, that helps individuals and caregivers with many different rare diseases bridge the gap between advocacy and industry.

It really struck me while at the past Global Genes Patient Advocacy Summit just how many hats I and so many others wear in the rare disease space and how so many of us are bridging the gap between non-profit and for-profit; advocacy for their child and advocacy for the disease at large.

We met people who currently have or lost a child with rare disease who are now working for the pharmaceutical industry who are trying to make a difference within the drug development process. We met people who started a foundation because of their loved one with a rare disease or people who have close friends who have a child with a rare disease and want to participate by joining and/or fundraising for an organization.

You wouldn’t expect to meet so many people who radiate positivity, joy and generosity at a rare disease conference where so many families need treatments and support.  But go to the Global Genes Patient Advocacy Summit and you will meet many who exude all of these qualities who are buoyed by hope, who wear many hats and strive to bridge the gap.

Blair Van Brunt
Blair Van BruntAuthor
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