It was great to join the Convenzis team again for the patient flow event. As always, the team were incredibly accommodating and happy to help. The quality of attendees is always of a high standard and relevant to the patient flow and to us also. We continue to have great discussions and footfall around our stand with no need to try and encourage people to come and see us. Really positive event for us and we look forward to working with Convenzis in the future.
NF Patients United
Neurofibromatosis Patients United (NFPU) is the European Neurofibromatosis umbrella patient association. Neurofibromatosis patients all around Europe face very similar challenges: limited access to proper medical and psychological care, limited access to information, limited access to clinical trials, little awareness in the general public and also limited awareness among health care professionals.
These challenges are easier to overcome together.
For that we built a strong joined European association. European NF patient organisations need to exchange ideas and best practice models constantly. If we choose the best ideas, have and develop a common strategy and implement this strategy together all over Europe, we can save a lot of resources, while maximising the impact of our activities.
As a patient association we can contribute on many levels through financing personnel, equipment and offering grants to young researchers. We refer to patient participation as involving patients in the whole decision making process, including their own treatment, the general medical care and research activities.
These are the national patient organisations within NFPU:
NF Kinder (Austria), Ananas onlus (Italy), ANF onlus (Italy), Croatian Neurofibromatosis Association, Dansk forening for NF Recklinghausen (Denmark), AANF (Spain), ACNEFI (Spain), Panhellenica Association of Patients and Friends with NF (Greece), Childhood Tumor Trust (UK), Neurofibromatosis Vereniging Nederland, APNF – Associação Portuguesa de Neurofibromatose (Portugal), Türkiye Neurofibromatozis Derneği , SNFV (Switzerland), NF Ireland, GER-NF
