Global Network of Neurofibromatosis Patient Organisations

Sharing best practices

Open Meeting 2021

NF Patients United will hold its annual meeting together with an open meeting for patients, relatives, caregivers and medical stuff. It will take place this autumn on November 6th and 7th, 2021 and it will be held virtual. There we will exchange best practices from NF patients organisations, have talks from NF experts and provide information lectures about ongoing research projects on Neurofibromatosis.

Here you find info from our previous meeting:

NF Patients United –
Open Meeting 2020

In the NF Patient United Annual Meeting 2020 our members shared their best practices and national projects for NF patients, which they conducted this year in their countries.
Watch their presentations here:

Roadmap to support young people with NF1

Elis Pires and Ines Fonseca from the Portuguese patient organisation APNF – Associação Portuguesa de Neurofibromatose present a roadmap for a psychological and educatioal support service dedicated to young people with Neurofibromatose NF1:

Coaching to improve executive functioning skills on NF1

Maria José Gavarrete & Natalia Loose from the Catalan NF Patient organisation ACNefi present their feisability study on coaching to improve executive functioning skills on NF1:

Overcoming the effects of lockdown on children with NF1

Clare Barklam is an advocate for special educational needs and disabilities of young people with NF in the U.K. In the NFPU annual meeting she talks about how the Childhood Tumour Trust helped to negate the impact of lockdown on children and young people through the social, emotional and educational impact of lockdown via online get togethers for those affected by NF1:

NF1, families and quality of life

Irene Caubo from the Neurofibromatose Vereniging Nederland (NFVN) talks about the impact of NF 1 on the quality of life at the NFPU annual meeting on Dec., 19th, 2020:

Community based specialised nurses – NF Best practice

Nerve Tumours UK funds a unique Specialist Support Network for children and adults, diagnosed with Neurofibromatosis. At the NFPU Annual meeting 2020 Karen Cockburn explains this NF Best practice concept in the UK:

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