Resources
ADCY5 Tools
We Are All Rare
The perfect tool for children and adults to start the discussion about Rare Disease. Written by a Rare Disease patient and her mom, you can use the puzzles, word search, and even the wheat/corn/soy/dairy free cookie recipe, to learn about how some students accommodate in school.
Teachers can use them in classrooms, students can take them home to share with parents and siblings, and students can share with friends.
Family calls on Zoom
Dates that have two times will follow the same agenda so there is no need to join both.
Please join the best time for you.
Dates are in the footer at the bottom of the page.
Times are in Los Angeles/ Pacific Time zone.
Slack Channel
Connect with other families on our private Slack Channel. Contact us to request access.
Facebook Community
Join our Facebook community to connect with other ADCY5-related dyskinesia families.
Follow us on Instagram to learn more about our community.
Support & Rare Disease Organizations
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.