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Melinda Burnworth
Arizona State Ambassador

What's Happening Now?


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.

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.

Online Registration has closed
please contact Melinda Burnworth at

Would you like to volunteer to assist in hosting a local community awareness event? Do you have an opportunity for Arizona’s Rare Action Network to attend your event? Contact the NORD Rare Action team today and learn more. Please check back regularly for news of upcoming events and activities in Arizona.

In order to make meaningful change in the lives of rare disease patients and their families in the state of Arizona, we need you! Become active with the Rare Action Network by joining and utilizing the resources available on this website to take action and create change.

State Report Card

In this fourth edition of NORD’s State Policy Report Card we are seeking to expand our analysis to more issues that affect the rare disease community while also providing a more targeted analysis of policies analyzed in previous editions of the report.

Scoring for State Policies

A: State policy meets all desired standards. An A grade is considered the model policy that other states should seek to enact.

B: State policy meets most, but not all desired standards

C: State policy on the given issue meets minimum standards

D: State has some policy in place, but it does not meet the standards of higher tiers

F: State has no policy provision for the relevant issue

State Information

Leslie R. Hess, Interim Director

Arizona Department of Insurance
2910 North 44th Street, Suite 210
Phoenix, Arizona 85018-7269


In order to get the issues that affect your life addressed, connect with your state representative by using the tool on our website.

Click Here

Complaint Submission – Mail this form to:

Consumer Affairs Division
Arizona Department of Insurance
2910 N. 44th Street, Ste. 210
Phoenix, AZ 85018-7269

Email for Assistance:
602-364-2499 or 800-325-2548 (in Arizona but outside Phoenix)

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