Our community

We provide support for families and individuals with CACNA1C-related disorders, including Timothy Syndrome and LongQT8, by fostering an empowering community of friends, supporters and medical professionals.

Our community has members all over the world.

Our community comes from: Brazil, Canada, Chile, China, Colombia, Finland, France, Germany, Hong Kong, Hong Kong, Iraq, Ireland, Israel, Italy, Kuwait, Malaysia, Mexico, Netherlands, New Zealand, Norway, Poland, Romania, Russian Federation, Slovakia, Spain, Switzerland, Turkey, Ukraine, United Arab Emirates, United Kingdom and the United States.
In the US, our community has members in: Alabama, Arizona, California, Colorado, Connecticut, Delaware, Florida, Georgia, Hawaii, Illinois, Indiana, Iowa, Kansas, Maine, Maryland, Michigan, Minnesota, Mississippi, Missouri, Montana, New Hampshire, New Jersey, New York, North Carolina, Ohio, Pennsylvania, Tennessee, Texas, Utah, Virginia, Washington, West Virginia and Wisconsin.

Sign up to our mailing list

Receive email updates on Timothy Syndrome Alliance news and events.

Sign up to our mailing list

Beyond Genes

Sharing experiences is a great way to connect with families affected by Timothy Syndrome.

Read the blog

Family day event

The event brings together families, friends and the scientific community.

Learn about the event

Facebook group

Our Facebook group is open to anyone who is interested being part of our community.

Join our Facebook group

Help us provide more support to our community

Your donations help us reach out to more families more often.

Your contribution will help:

  • raise awareness to drive research and clinical development
  • enhance scientific understanding
  • reduce the isolation faced by families

With your help, treatment and a cure for future generations is closer to being found.

Donate now

See other ways that you can support us.

Consent Preferences