The India Task Force has a strong track record of running webinars and conferences and was instrumental in setting up India’s first PH patient association. This association offers educational resources and support groups for patients, caregivers, and family members.
Recently, the Task Force collaborated with the IDDI Access to Care Workstream to help improve that group’s understanding of the challenges and barriers to access to care in India.
Future plans include developing customised guidelines and protocols for treating PH in India, the potential development of an exciting new specialist PH non-profit organisation affiliated with PVRI, and another scientific meeting scheduled for October 2024. PVRI is providing financial support for the meeting.
Interested in accessing global data on PH patient experience? Almost 4,000 patients and carers across 85 countries completed Phase 1 of our PH Global Patient Survey (PHGPS). Questions across all PH groups included diagnostic tests & timelines, genetic testing, treatments, financial burdens, hospital visits, research participation, quality of life, telemedicine, patient-reported outcome measures, and self-monitoring with digital technology. The findings have the potential to improve patient care, guide future research and help us address unmet needs.
