The First Ever Seattle Rare Disease Fair happened on June 3rd, 2017. And it was a BLOOMING success.
The goal of the event was to spread awareness of rare disease and connect rare families to others who have dealt with similar experiences.
The thing is, rare diseases aren’t all that rare. A “rare disease” is only called rare in respect to other diseases. On a global scale, it’s an astronomical issue and one in every ten people is affected. That’s 30 million people just in the United States. And unfortunately, it’s still hard to predict where rare disease is going to strike.
“1 in 10, Could be you”
So what can you do to help advocate for rare disease research and support those currently affected? Keep reading this recap of the fair to find out! The Seattle Rare Disease Fair encouraged people to “Care for Rare” and if you weren’t able to attend, it’s not too late to get involved!
The Fair was organized by Born A Hero, Pfeiffer’s Health and Social Issues Awareness, and sponsored by the Every Life Foundation, and Patient Worthy. Over 30 organizations were in attendance including Seattle Children’s Research Hospital, the SYNGAP Foundation, Some1 Like You, Narcolepsy Network, Avery’s Angels Gastroschisis Foundation, National Organization for Rare Disorders (NORD), Global Genes, and the Children’s Craniofacial Association. All together 34 rare diseases were represented.
The day featured talks by James B. Hendricks, PhD- President of Seattle Children’s Research Institute, Dean Sur- President/Co-Founder of the MLD Foundation, Erica Mossholder- Executive Director of CCA, Kendall Davis- Sr. Manager of Strategic Alliances for Global Genes, Meagan Holt- Director of Patient Branch for Project PC, Carolina Sommer- Founder/CEO/President of Born a Hero, Dawn Shaw- Author/Speaker of Facing up to it, and our very own Kathy Devanny- Advocacy Relations and Outreach Specialist for Patient Worthy.
Care package donations were collected for Seattle Children’s Hospital, face-painting and a photo booth were available for kids, and live music by Tyler Edwards and DJ Bryan Kretz lit up Westlake Park during the event. The day provided a plethora of educational resources and opportunities to connect with others. It effectively enlightened minds, resulted in joyful smiles, and intrigued passersby. It achieved its goal of spreading awareness to the Seattle (and global) community of the prevalence of rare disease.
This issue is large, but every event like this one is a step toward improving lives of those in the rare community.
Born A Hero is looking forward to connecting with more organizations for next year’s event so that even more diseases can be represented. So keep a look out for next year’s fair, and contact Born A Hero if you would like your organization represented!