Living with a rare disease comes with unique challenges, and your experiences can help make a difference.
The Arizona Rare Disease Advisory Council (ARDAC) is inviting individuals and families affected by rare diseases to participate in the Arizona Rare Disease Community Survey.
At the Arizona Network for PKU and Allied Disorders (ANPAD), we understand how important it is for patients and families to have access to quality healthcare, insurance coverage, education, and community resources. This survey is an opportunity to share your experiences and help Arizona better understand the needs of our rare disease community.
Why Your Participation Matters
Whether you are living with PKU or another rare disease, caring for a loved one, or advocating for someone affected, your perspective is valuable.
By sharing your experiences, you can help inform efforts to:
- Improve diagnosis and care: Identify challenges patients face when seeking timely diagnoses, specialized treatment, and ongoing medical care.
- Expand insurance coverage: Highlight barriers to obtaining coverage for necessary treatments, medications, medical foods, and specialized services.
- Strengthen Arizona resources: Help identify opportunities for better education, support programs, and statewide resources for individuals and families living with rare diseases.
Who Can Participate?
- The survey welcomes input from:
- Individuals currently living with or who have previously lived with a rare disease.
- Parents, family members, and caregivers of individuals affected by rare diseases.
- Advocates who support Arizona's rare disease community.
Just 5–10 Minutes Can Make a Difference!
The survey is quick and easy to complete.
What you should know:
- Takes approximately 5–10 minutes.
- Participation is completely voluntary.
- Responses are anonymous.
- Information collected will be used only to inform advocacy and policy efforts and will not be shared or used for other purposes.
Make Your Voice Heard!
Every experience matters. By participating, you can help the Arizona Rare Disease Advisory Council better understand the challenges, needs, and priorities of Arizona's rare disease community.
Take the Arizona Rare Disease Community Survey today!
[TAKE THE SURVEY]
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TAKE THE SURVEY - https://qualtricsxmf7b47qnbj.qualtrics.com/jfe/form/SV_bwKRqob5BvCF3ro
For questions about the survey, contact ARDAC at ardac@azdhs.gov.
Together, We Can Make a Difference
At ANPAD, we believe that stronger communities begin with informed advocacy. We encourage our PKU and allied disorders families to take a few minutes to participate and share this opportunity with others affected by rare diseases throughout Arizona.
Your experience matters. Your voice deserves to be heard.