Driving research, providing support and improving outcomes for patients and their families affected by rare conditions

It is with great sadness that the Myrovlytis Trust announces the loss of Dr Anna Webb.


Anna joined the Trust in 2021 as the CEO. Anna came to us with a wealth of experience in the genetic field and a deep passion for helping those with rare conditions gain access to medical services and research. She fought hard with her own medical condition and pushed to never take no for an answer, with the momentum to keep searching for new ways to treat the untreatable. Anna far surpassed any medical preconceptions placed on her and faced her future with positivity and strength.


Anna was unequivocally certain that there can be a cure for BHD, and that the trust would be there to support research to find said cure. Her more recent work within the osteosarcoma field has led to the trust developing a clinical trial database. The database is vital in allowing patients to gain access to trialling alternative treatment for this rare cancer.


Anna has been crucial to the success of reinvigorating the trust and has left behind a legacy for which we can build upon. We are eternally grateful for her hard work and dedication to the charity.


The trusts team are devastated by the loss of their leader, mentor, and most importantly, their friend. Anna supported and promoted development for all. She displayed great empathy that touched all the relationships she had with the team, patients and the wider Myrovlytis Trust community. We are privileged to have worked with such an amazing person who had unwavering faith in us. We will greatly miss our Anna.


Our heartfelt thoughts are with Annas husband, children, family, and friends.


We understand that Anna touched the lives of many people she worked with. We are here for you if you have any questions or thoughts on this sad news. Please email us at contact@myrolvytistrust.org


Annas family have kindly asked for donations to be made to the Myrovlytis Trust in place of flowers. If you would like to make a donation please visit Just Giving.