The Maffucci and Ollier’s Association began as the website www.maffucciandolliers.co.uk which was launched in April 2013 by Charlotte Anwyll after her son was diagnosed with Maffucci Syndrome the previous year. It is run by a team of volunteers offering their time, skills and knowledge.
The Association has been designed to share information and experiences of Maffucci Syndrome and Ollier’s Disease from those affected and those with knowledge of them to support and provide guidance on these rare conditions. The associations overall aim is to initiate projects for the prevention, treatment and cure of Maffucci Syndrome, Ollier’s Disease and any other associated conditions.
The Maffucci and Ollier’s Association organises an annual conference which is a support and an opportunity for those previously and newly diagnosed, their families and for professionals. In the past we have had presentations from Medical Professionals, Hospitals and Research projects and individuals attending from all over the world. We have grown each year and the feedback from those in attendance has been very positive. To find out more please email firstname.lastname@example.org.
The Maffucci and Ollier’s Association is run entirely voluntarily and will apply for funding and grants to support and enable them to continue their work.
The Association is to bring us together, to work together.
“Today was just so lovely for me and I’m sure others too, to finally meet people who can relate to you and who understand how you feel, because however supportive people around you are, they don’t understand how alone you feel.”
Conference Feedback 2014
The Association, the trust and its website content has been set up to provide information and guidance, we always advise you gain professional medical advice in relation to your condition.