NF Patients United – CTT in Europe

12 organisations from 9 different countries form the newly founded NF Patients United, (NFPU) – a patient lead group working together to change and improve the lives of those living with these conditions throughout the European Community, and to link with scientists and researchers worldwide. Childhood Tumour Trust are delighted to be an integral part NFPU and that our Youth Ambassador Nicole Martin will be part of the Board as a patient representative.

At the Global Neurofibromatosis Conference in Paris interesting presentations were given by several members and the Board was voted in. This was followed by a very successful first assembly meeting to discuss future projects of NFPU, – how to share resources and ideas, to work together for better care and to raise awareness, with input and advice from the USA charity,

The Children’s Tumour Foundation.

 

NF Kinder

NF Kinder is the Austrian patient organisation for people all ages affected by NF (NF1, NF2 and Schwannomatosis). Since its establishment in December 2013, we are working on improving care for NF patients, enabling sustainable research activities, building psycho-social programs for patients and family members, organising educational events for affected families but also health care professionals, and raising awareness and funds for NF. Since March 2018 NF Kinder is co-running Austria’s first center of expertise for NF in Vienna/ Austria.

The heart of this institution is a special department for NF patients, that takes care of NF patients and their families 2 days per week. This department includes 2 neuro-oncologists, 1 psychologist, 1 social worker and several nurses. We could not only improve access and quality of care for NF patients in Austria, but also assure resources of 12 hours per week for research activities.

The president of NF Kinder, Claas Röhl, was voted to be the first president of NF Patients United.