FOR HEALTHCARE PROFESSIONALS

Clinic Support Program

FOR HEALTHCARE PROFESSIONALS

Clinic Support Program

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Clinic Support Program

The Jain Foundation manages a Clinic Support Program (CSP) which offers neurology clinics in the US education, awareness, and engagement that is directly related to dysferlinopathy as well as events focused on developing LGMD patient-clinic relationships. In addition to offering genetic testing to qualified patients, the foundation provides clinicians participating in the CSP advocacy updates several times each year in an effort to keep clinicians up to date in the field of dysferlin research and general LGMD initiatives . CSP participants are offered inclusion in the Jain Foundation Clinician Directory which has become an essential resource to individuals who are looking to receive care from a clinician who is familiar with LGMDs.

CLINIC SUPPORT APPLICATION

Clinic support includes:

  • Genetic testing for qualified patients via clinicians
  • Advocacy and Research news updates
  • Hosting community events: collaborating on hosting in person events that provided education, social support and awareness for both the clinical team and families.
  • Awareness materials: supplied to clinics in the form of brochures and posters to provide to individuals when they attend visits or inquire about social services.
  • DYSF variant resolution support
  • Information about the natural history of dysferlinopathy
  • Opportunities to collaborate and become involved in clinical studies

We encourage you to reach us with any thoughts, questions, or interest about this topic as CSP can be customized for your individual clinic

Our aim is to provide placement in the Dysferlin Registry for all individuals diagnosed with dysferlinopathy. The Dysferlin Registry is essential in preparing the community for successful clinical trial recruiting. Please consider encouraging patients to inquire about getting registered by contacting us at patients@jain-foundation.org.

If you would like to request materials or information for your clinic please complete a Clinic Support Application.

If you are an individual with LGMD and would like to request support for the clinic you visit, , please email patients@jain-foundation.org or call us at 425-882-1440 or 425-882-1492.