Westlake Park | 06/03/2017 | 11:00 am – 4:00 pm
One in ten people in the United States suffer from a rare disease. That is 30 million people in the US. Come learn about what makes a disease or disorder “rare,” learn about different rare medical conditions, what questions remain unanswered, and what you can do about it. Come get inspired!
1 in 10, could be you!
Several inspiring people will share their experience working with or being a part of the rare disease community, and present ways that you can help.
A number of organizations will be represented. Face painting and activities for kids and a photo booth will also be offered.
WHAT CAN I BRING?
Please bring a partial or complete care package if you can. These care packages will be given to children at Seattle Children’s Hospital suffering from rare diseases. If you aren’t able to bring a care package, please still come – we would love to see you there!
A care package could include the following items:
Crayons and/or markers
Look and Find Book
Glitter glue bottle
Soft pillow and/or blanket
Sensory (textured) balls
Bubbles, pinwheels or Noiseless party blowers
James B. Hendricks, Ph.D- President, Seattle Children’s Research Institute
Dean Suhr- President/Co-Founder, MLD Foundation
Erica Mossholder- Executive Director of CCA
Kendall Davis- Sr. Manager, Strategic Alliances of Global Genes
Meagan Holt- Director of Patient Branch of Project PC
Dawn Shaw- Author/Speaker www.facinguptoit.com
Kathy Devanny- Advocacy Relations and Outreach Specialist of Patient Worthy
Carolina Sommer- Founder/CEO/President of BORN A HERO
Rare Medical Conditions Represented
Conradi- Hunermann syndrome
ADNP Syndrome/Helsmoortel Van Der Aa Syndrome
Polyostotic Fibrous Dysplasia
Polycystic Kidney Disease
Familial Chylomicronemia Syndrome