STAND NUMBER: N364
FND Hope UK
We are a patient-led charity for Functional Neurological Disorder.
FND Hope UK is part of the first and only global patient-led charity for people with Functional Neurological Disorder. Originating as a grassroots campaign, it uncovers the hidden world of FND and empowers those affected to live their best possible life.
Functional Neurological Disorder (FND) is a problem with the functioning of the nervous system and how the brain and body send and receive signals. This causes a range of neurological symptoms such as seizures, weakness, paralysis and chronic pain.
FND has multiple causes and can be triggered by physical injury, psychological or other trauma to the brain and or body. This stops the nervous system working properly. The disruption to the signals is like letters being sent to the wrong address, despite having the correct label.
FND Hope International began in 2012 and the UK community launched in 2015. Today FND Hope UK is part of a global network spanning America, Australia, Canada and the Netherlands with members in 100 countries.
FND Hope UK campaigns to improve understanding, working with those affected, researchers and health professionals. We support people to enjoy the best life they can, advocating for their right to diagnosis, treatment and care.
FND Hope UK`s education and awareness work includes:
o Creating a leading UK Medical Experts Committee to assist in FND research.
o Supporting research with evidence of need, enabling those with FND to get involved - in 2018, we supported nine research projects.
o Growing the world's first Scientific Registry in partnership with the Genetic Alliance, bringing together research to help spot global trends, securing more than 364 registrants with FND.
o Hosting webinars with medical experts - so far in 2019, 170+ people attended and 12,000+ viewed live Facebook recordings.
We empower the FND community to promote wider awareness, through a network of support services and events. This activity includes:
o Launching face to face Peer Support Groups, with eight across the UK today and more due to launch shortly.
o Creating online support networks, with a community of more than 19,000 via social media, plus 450,000 visitors to the international website during 2018.
o Supporting fundraising and awareness raising since April 2013, including #FNDAware in 2019 with social reach of 111,000+ and international awareness campaign `World FND Month`
FND Hope UK campaigns for effective diagnosis and specialist care to enable recovery. This includes:
o Hosting the first ever part Parliament Event in 2020, to discuss urgent policy action for people with FND
o Petitioning Government with more than 10,000 signatures to increase funding for multi-disciplinary treatment centres
o Canvassing and leading the successful change on diagnostic coding used to identify conditions
o Initiating discussions with NICE to develop FND specific guidelines and securing recognition for FND in new Suspected Neurological Conditions guidelines.
o Building alliances across the larger community including The Neurological Alliance, UK Functional Neurological Forum (UK FNF) as part of the British Neuropsychiatry Association and the FND Society.