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Sad News - Tess Harris

It is with great sadness that we advise you of the passing of one of the Ciliopathy Alliance’s biggest allies, Tess Harris, who peacefully passed away on March 1, 2024, at the age of 68.

Tess was a tireless advocate for Polycystic Kidney Disease (PKD) for over 20 years, as a Trustee and later becoming the CEO of the PKD Charity.

 She was one of the founder members of the Ciliopathy Alliance taking on many roles:-

·        As the  Secretariat since 2010

·        Organising  the Cilia Conference biennial series since it’s conception in 2012

·        Playing an integral role in large research consortia representing the ciliopathy alliance patients (TheRaCil, CiliaREN, SCiLS)

·         Generally raising awareness and advancing research into ciliopathies, further amplifying her impact within the rare disease community.

Alongside her role with PKD Charity in the UK, Tess served as President of the PKD International Alliance from April 2011, expanding her influence within the global PKD community and championing international partnerships to advance research and support initiatives worldwide.

She will be remembered for her unwavering dedication to helping people with PKD and other ciliopathies, as well as her warmth and empathy.

The Ciliopathy Alliance will miss her very much.

For more information please visit PKD Charity