If you or your family are looking for financial resources, please reach out to our warmline:
Email: info@myotonic.org
Phone: 415-800-7777
In order to best support you in finding eligible programs, please be prepared to share the following information:
- Age
- Location (City, County and State)
- Health Insurance Plans
- Disability Insurance status
- Household Income
US Only
For Insurance approvals, health care costs, and help applying to social security disability insurance, consider reaching out to:
The Patient Advocate Foundation (PAF): https://www.patientadvocate.org/connect-with-services/case-management-services-and-carelines/
PAF offers free case workers available to support those living with rare disease apply for disability, appeal to insurance for medication or specialist coverage and connect you to other resources.
PAF works on a first come first serve basis, and it can take multiple attempts to get connected to a case worker. Please be advised that it is best to call them early in the morning, as they operate on the east coast. If you don’t get connected, please keep trying!
800-532-5274
