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April 25, 2019
11:00 am - 2:00 pm

Arizona State Capitol, Senate Lawn

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Join rare disease patients, caregivers, healthcare providers, and the community in learning more about rare diseases in Arizona on Thursday, April 25, 2019 as part of the inaugural Rare Disease Community Awareness Event.

Overview of the Event:

During this “Duck, duck, zebra!” themed community awareness event, rare disease patients, caregivers, and healthcare providers will have the opportunity to educate the community about rare diseases. It is estimated that 1 in 10 individuals in Arizona has a rare disease. Rare disease patients and their caregivers face many challenges related to their healthcare. These include an average of 5-7 years for a diagnosis, few medical experts on the disease, little to no research known about the disease, extensive and life-long medical needs, high cost of care and treatment, small scattered patient populations, social isolation, and only 5% of rare diseases have an FDA-approved therapy. These facts highlight the important role of how community awareness about the daily challenges that rare disease patients face may help overcome these challenges.

Recall the childhood game “Duck, duck, goose (gray duck)” whereby participants sit in a circle and the “it” person walks around the outside tapping each players’ head calling them a duck until they declare one person the rare “goose”. The official symbol of rare diseases is the “zebra” and is noted for its black and white stripes, which are central to its uniqueness. Everyone has his/her own stripes, those characteristics that make each individual distinct. While each of the more than 7,000 rare diseases are unique, many commonalities unite the rare disease community.

An informational table will provide basic information about rare disorders. Using the “round-table discussion” approach, those living with the challenges of rare diseases (or the “zebras”) will share their first-hand knowledge about the disorder to the community (or the “ducks”). The goal of this community awareness event is to allow rare disease patients and their caregivers the opportunity to educate others about these unique disorders to further support and develop a better understanding of the challenges these patients face.

If you are curious and want to learn more, come join us at this “Duck, duck, zebra!” themed rare disease community awareness event.

Details of the Event:

The event is on Thursday, April 25, 2019 at the Arizona State Capitol (Senate Lawn) located at 1700 West Washington, Phoenix, AZ 85007. Free public parking is available at Wesley Bolin Memorial Plaza. The event will kick off at 11:00 AM near the “Duck, duck, zebra!” information table on the Senate Lawn (see attached map).

Detailed Agenda*:


Time* Activity
11:00 a.m. – 11:30 a.m. Meet & Greet


11:30 a.m. – 12:00 p.m. Opening Remarks

Instructions for the Day

12:00 p.m. – 1:40 p.m. “Duck, duck, zebra!” Activities

Rare Disease Round Table Discussions


1:40 p.m. – 2:00 p.m. Closing Remarks


*Times are approximate and may flex.

Note: The event is located outside on the grassy lawn with limited seating. Comfortable shoes, sun protective items (sunglasses, hat, sunscreen), and hydration are encouraged. Public restrooms and a small café (food and drinks) are located in the Arizona State Capitol Museum.

Online Registration has closed
please contact Melinda Burnworth at

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