Our UK FA Liaison and Research Coordinator
Fanconi Hope has taken an important step forward in support of improved care for the Fanconi Anaemia (FA) community in the UK by funding a long term study through Manchester University called: “Observational study for long term health implications of individuals affected by Fanconi Anaemia”.
One of the first activities in this study, which started in May 2016, was to fund a Liaison and Research Coordinator for Fanconi Hope, as a central point of contact for patients and parents, clinicians and researchers across the UK for all matters relating to Fanconi Anaemia, whether it be queries from parents about what treatment to expect, queries from patients on what regular check-ups will be required in adulthood, or queries from consultants who have little experience in dealing with FA due to the rare nature of the condition.
We are delighted therefore to announce the appointment of Beth Lee as Liaison and Research Coordinator. Beth is an experienced paediatric nurse, who has been working at Royal Manchester Children’s Hospital for nearly thirty years, mostly in paediatric haematology and oncology. For the last eight years she has been the lead nurse for the Fanconi Anaemia and cancer associated syndrome service at the Royal Manchester Children’s Hospital. Beth will be supported by experienced consultants in Manchester and Cambridge who are running the study.
Beth is working 1 day/week initially and if you would like to drop her a line to introduce yourself, she will be delighted to email or phone you at a mutually convenient time so you can learn more about how she can help you.
Please email Beth at firstname.lastname@example.org or call her on 07391 782115 and she will get back to you.
We would like to thank all those of you who have made this possible by fundraising for Fanconi Hope and would urge you to continue fundraising so that we can extend the study and the support that it brings beyond its initial 5 year duration.