Are You a Patient or Carer?

We are eager to hear from those who have Paget’s disease, or their carers, who are interested in volunteering as a Trustee for the Paget’s Association. Led by our Chairman, Professor Roger Francis, our Trustees are all volunteers with an interest in Paget’s disease. Having Trustees is a legal requirement of the charity, and the Association is held to account by the Charity Commission. The Trustees work hard to fulfil the aims of the Association, which are to inform and support those with Paget’s disease, to raise awareness and to support research into the condition.

When recruiting new Trustees to the Board the Chairman ensures, as far as possible, that the combined skills of the Board of Trustees are balanced. As far as possible, these include knowledge of the following: what it’s like to live with Paget’s disease; medicine; finance; marketing; human resources; legal and fund-raising.

We are seeking to appoint a Trustee who has Paget’s disease or who is a carer for someone with the condition. To balance the current Board of Trustees, it would be desirable, if possible, to appointment someone with knowledge of, or an interest in, finance and/or accounting. Volunteers join the Board, usually for an initial period of three years.

How to Apply
If you have Paget’s disease or are a carer for someone with the condition and would like to be considered for a place on the Board of Trustees, please email the Paget’s Association using the email address below, before the 11th September. Please state why you would like to become a Trustee and include any particular skills or interests that you have, which you believe would be useful in the role of Trustee?
Apply to, [email protected]

What is it like to be a Trustee?

To give Ron Taftyou an insight into the work of a Trustee we put some questions to Patron, Ron Taft who was a Trustee for many years.


What was it like to be a Trustee of the Paget’s Association?
It was a good feeling, to be part of the Board, not just a member of the Association.

What does being a Trustee involve?
Attending Board meetings approximately four times a year. In-between board meetings the Chairman may ask your opinion on issues concerning the Charity and you may be given small tasks in line with your experience.
It is a voluntary role so there is no payment. Expenses however, are reimbursed and knowing that you’ve helped those with Paget’s disease is very satisfying.

What are the responsibilities?
As a patient with Paget’s disease, I understand the issues concerning those with the condition and their families so it was vital that I ensured the concerns of those with Paget’s were considered.

Did you receive support from the Board?
Yes, indeed I was supported by both the Board and the staff.

Do Trustees require any special qualifications?
Not academic qualifications but experience in relating to people helps. The most important thing is a desire to help the Charity to continue to support others with Paget’s disease.

Do you feel that the Board listen to your opinion?
Yes, very much so.

Do you feel that you make a difference to those with Paget’s disease?
Yes. Making a difference is the best part!

How does having Paget’s disease help with being a Trustee?
I have practical experience of the problems such as how the pain and difficulties influence everyday life.

What skills might be useful as a Trustee?
The ability to listen and learn but mainly common sense!