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Idiopathic Subglottic Stenosis (iSGS) is a rare and often misunderstood condition. Many patients spend years feeling isolated, misdiagnosed, or unsure where to turn for reliable, practical information.
For the past 17 years, I’ve been supporting the iSGS community through patient education, peer support, advocacy, and collaboration with clinicians and researchers. This includes running and maintaining online resources, moderating support groups, producing patient guides, and representing the patient voice at medical meetings and conferences.
All of this work is currently done on a voluntary basis. As the community and demand for support have grown, so have the practical costs involved.
What your donation helps support
- Maintaining the website that hosts the Rough Guide and patient resources
- Software licences used to create educational materials and research outputs
- Cybersecurity and secure storage of research materials
- Equipment used to develop resources and collaborate internationally
- Conference attendance to represent the patient voice and bring back the latest knowledge
- The ongoing coordination of an international patient research panel
Over the past 17 years, your support has helped make possible:
- World's largest airway stenosis support community (10,000+ members)
- International Airway Stenosis Research Panel (3,500+ volunteers)
- 15+ peer-reviewed publications
- Multiple international research collaborations
- Free patient resources downloaded by thousands of people
- Conference presentations representing the patient perspective
Thank you for supporting patient-led work in the iSGS community ❤️
— Catherine
Organizer
