Patient Stories Form

ADCY5 Patient Stories Form

Patient Name

Email Address

Who is filling out this form?

Myself

Parent/Guardian

Caregiver

Can you start by sharing a little about yourself and your family?

Can you tell us about the first symptoms you noticed?

When did you first realize there might be something different or unusual?

What was your odyssey to getting a diagnosis?

What specialists or testing did you go through, and how long did it take to get the result?

Describe how you live with ADCY5‐related movement disorder (ADCY5‐RMD) day-to-day: how is your routine similar or different to others?

What are some ‘wins’ and ‘lows’?

What are you excited about when you think of the future?

How has your outlook changed (before and since the diagnosis), and what gives you hope?

Newly Diagnosed?

The most important thing our rare ADCY5‐related movement disorder (ADCY5‐RMD) community can do is come together to share information and build knowledge about this disorder, getting us closer to treatments.

Learn More

Patient Stories Form

ADCY5 Patient Stories Form

Newly Diagnosed?

Family Zoom Meetings 2025