Seattle Rare Disease Fair
CARE ABOUT RARE
Westlake Park | 06/03/2017 | 11:00 am - 4:00 pm
Rare Disease Fair
Rare Disease Awareness
Rare Diseases
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!
Date
06/03/17
Time
11:00 am - 4:00 pm
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:
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Stress Balls
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Coloring books
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Crayons and/or markers
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Look and Find Book
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Glitter glue bottle
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Soft pillow and/or blanket
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Squeeze toys
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Playdough
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Sensory (textured) balls
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Calming music
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Bubbles, pinwheels or Noiseless party blowers
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Puzzles
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Books
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Stuffed Animals
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Kaleidoscope
Organizations Represented
Children's Craniofacial Association
Speakers
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
Adrenal Insufficiency
Pfeiffer Syndrome
Metachromatic Leukodystrophy
Mitochondrial Disease
Kawasaki Disease
Zellweger syndrome
Narcolepsy
Charcot/Marie/Tooth
Niemann Pick
Fibromuscular Dysplasia
Ehlers-Danlos Syndrome
SYNGAP Syndrome
Conradi- Hunermann syndrome
ADNP Syndrome/Helsmoortel Van Der Aa Syndrome
Teratoma Tumor
Fibrous Dysplasia
Polyostotic Fibrous Dysplasia
Gastroschisis
Platelet Disorder
Polycystic Kidney Disease
Necrotizing Enterocolitis
Familial Chylomicronemia Syndrome
Hermansky-Pudlak Syndrome
Castleman Disease
Galactosemia
Huntington's Disease
Ataxia
Organizers
BORN A HERO
Pfeiffer's Health and Social Issues Awareness
Our Mission is to EMPOWER kids with Pfeiffer Syndrome. We FIGHT to improve quality of life for patients and their families. We STRIVE to educate the world so people RECOGNIZE the HERO that lives in each Pfeiffer’s child.
Sponsors
Patient Worthy