Call for Members: IRDiRC Task Force on “Enabling and Enhancing Telehealth for Rare Diseases Across the Globe

Irdirc call

The Funders Constituent Committee (FCC) have set up a Task Force to identify barriers and opportunities for the use of telehealth to improve diagnosis, care, and research experiences for rare disease patients – including technological, legal, cultural, linguistic, healthcare system, and patient/provider factors.

This will be accomplished through survey and systematic review of existing models of telehealth, their uptake and usage by the rare disease community, and their specific value and effectiveness. The Task Force will then develop “best practices” for introducing telehealth services into communities where they would be most beneficial using realistic and culturally sensitive approaches.

IRDiRC is currently assembling a team of experts to populate this Task Force and is specifically looking for members with expertise/experience in one or more of the following areas:

  • Telehealth providers across a wide variety of specialties, disorders, and geographic locations
  • Professional organizations that support career development for clinicians
  • Primary and specialty care providers
  • Policy makers
  • Healthcare systems
  • Healthcare insurance companies
  • Able to commit to monthly teleconferences, a yearly meeting, regular committee activities, and email correspondence

How to Apply?

If you are interested in taking part in this activity, please send your CV, biosketch, and letter of motivation (one paragraph each) to the Scientific Secretariat before the 30 November 2021

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