The Funders Constituent Committee of the International Rare Diseases Research Consortium (IRDiRC) has 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?
For IRDiRC Members:
If you are interested in taking part in this IRDiRC activity or would like to propose candidate(s), please send the expression of interest with the following information to the Scientific Secretariat (scisec-irdirc@ejprarediseases.org) before 30 November 2021.
- Name of the candidate
- Affiliation and location of the candidate
- Contact information of the candidate
- Expertise that the candidate is expected to contribute to this Task Force
For Non-IRDiRC Members:
If you are not an IRDiRC member but are interested in taking part in this Task Force, please send a short biography and letter of motivation (1 page) to the Scientific Secretariat (scisec-irdirc@ejprarediseases.org) before 30 November 2021.
Only selected candidates will be contacted. Other applications will be kept for potential future collaborations.
