Friday, 16 March 2012
Interview with the British Dupuytren's Society
I am happy to say that I got my questions back from the British Dupuytren’s Society with lots of useful information. Read on to see their answers:
1) Why does the British Dupuytren's Society exist? and which diseases is it raising money for?
We exist as a patients support organisation to help provide sufferers of Dupuytren's Disease, Ledderhose Disease (Plantar Fibromatosis) and Peyronie's disease with up to date and accurate information about their condition, and the options available for treatment. This also means working alongside medical professionals, such as GP's and with organisations such as the NHS to ensure patients are receiving the most effective and timely treatment for their condition. You can always find a 'mission statement' on our website too.
2) When was the charity founded and was there a specific factor in initiating the formation of the charity?
The charity was founded following a meeting in June 2011, by two Dupuytren's patients, with Wolfgang Wach the chairman of the International Dupuytren's Society. Wolfgang, who lives and works in Germany was receiving increasing demands for support from patients and health organisations in the UK and wanted to create a local UK organisation to perform this work. The two founding patients were already active members of the International Dupuytrens Society helping Wolfgang with his work. We were quickly joined by another Dupuytren's patient who volunteered their time to create the charity as a co-founder Trustee. We now have some medical professional Trustees and a number of Doctors and Surgeons on our Advisory Board.
3) Does the charity arrange any fund raising events?
The charity is still in the early stages of creation, establishing a presence, legal and financial framework for its operations. We have a 'to-do' or project list and will support fund raising events in the future.
4) Where does the money given to the charity go?
The charity is run entirely by volunteers so all funds go towards the charities goals and not to an employees wages. Since the charity is new, early donations have gone towards getting established as already described, but including information on and creation of our website. Some examples of our work to date include: patient submissions to regional NHS Trusts, support for awareness events led by Pfizer, media events including magazine and television, creation of a patients leaflet for Dupuytren's and proposals for new GP training. Our website lists other targets for funds. A forthcoming example is a talk we will give at the North East British Chiropody and Podiatrist Association annual conference. In this example we want to raise the potential for a national protocol for treating Ledderhose disease.
5) Does the charity have many volunteers? Is the charity in need of volunteers with specific skills?
The charity is run entirely by Trustee volunteers with the help and support from the Advisory Board, Pfizer and the International Dupuytrens Society. Although we have a growing membership base we have in the past asked for volunteers with IT, graphic design and publishing skills. We welcome volunteers with a knowledge of the NHS.
6) Does the website receive many views and do you think there is as much interest in Dupuytren's given the number of people that it affects?
We don't have useful analytics data as we have only recently added analytics code to the website. Ask us again in a few weeks. I would say based on the number of Facebook 'likes' and emails we receive that there is still a large untapped patient audience out there.
7) What advice do you have for anyone with Dupuytren's or Ledderhose?
Do some research of your own as your GP may not know the latest information on your condition. Seek an experienced Consultant Doctor or Surgeon with whom you can forge a relationship. Since there is no cure you may need to rely on this relationship for many years.
Right I hope you enjoyed that post and found some useful information in there.One thing I noticed was how much this is a developing charity and hopefully this is a good sign for the future of both research and treatment into these diseases.