Susie Gear United Kingdom
Susie’s passion is using her 35 years’ experience in international business and dialogue to create a brighter future for those living with rare kidney disease around the world and particularly the second most common form of inherited kidney disease, Alport Syndrome. Alport impacts kidneys, ears and eyes and impacts many members of Susie’s family, including Susie herself plus two of Susie’s three sons who are now young adults. Both sons had kidney transplants recently and now work in London and study at Edinburgh University respectively. Thankfully, Susie’s Alport genetic variant caused very mild symptoms and she recently donated a kidney to her youngest son whose life at university is understandably transformed.
Susie currently has a portfolio of roles that facilitate global collaboration and the delivery of a vibrant research ecosystem advancing treatments and knowledge for Alport Syndrome. Susie is Chief Executive of Alport UK which creates a brighter future for people living with Alport Syndrome. Susie also chairs an international committee of 32 Professors (clinicians and laboratory scientists) and national patient organisation representatives that make up the growing Alport Syndrome Alliance – a global network advancing treatments and knowledge for Alport Syndrome.
Over the last 10 years, Alport UK worked with the international committee of the Alport Syndrome Alliance to deliver nine international scientific workshops with local teams in China, Singapore, Cyprus, Canada, online, Italy, Germany, Scotland and England. Tenth and eleventh international workshop in Hungary (with ERKNet) and Brazil are in planning for September 2026 and 2027. The international workshops encourage collaboration and innovation and featured over 500 new abstracts/scientific projects for Alport.
Susie contributes to a number of international projects that emerge from the workshops. For example, Susie is working on how to simplify the naming of Alport Syndrome, developed international clinical guidelines (including specific ones for low- and middle-income countries), improve the outcomes for women living with Alport syndrome. Each project results in a collaborative international publication. Susie also supports many individuals and families living with Alport Syndrome.
As a creative person with a degree in information design and training in motivational theory and complex programme management, Susie thrives on the privilege of engaging diverse teams to align around ideas and develop programmes to deliver practical outcomes that benefit many stakeholders.
31 March 2026
| Time | Session |
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9:10 a.m.
10:40 a.m.
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SK
Main Hall
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