Inherited motor neurone disease (MND)
Resources and Information
National MND charities
MND Association
The MND Association is a national charity working to help people affected by MND secure the care and support they need, while promoting and funding research into causes and treatments. They provide accessible information on inherited MND including factsheets on genetic testing and starting a family. They also host a research blog with information about the latest findings from studies on MND, a dedicated helpline (MND Connect), and a forum to connect people affected by the disease. They organise local support groups and train Association Visitors who offer one-to-one support to people affected by MND, including emotional support and information about the help available.
MND Scotland
MND Scotland provide care and support to people in Scotland living with MND. Their website offers information on living with MND, the services they offer, and research. They host a (virtual) support group for people affected by MND.
MND Association Northern Ireland
The MND Association Northern Ireland provides similar support to people in Northern Ireland affected by MND.
Genetic Alliance UK
https://geneticalliance.org.uk/who-we-are/
Genetic Alliance UK is an organisation supporting people with genetic conditions. The website has information on a range of topics, including understanding key terms in genetics (such as DNA, genes and chromosomes), inheritance patterns, and reproductive options. It provides information about genetic testing and insurance.
The Department of Health and Social Care also provides a consumer guide called ‘Code on Genetic Testing and Insurance’.
Human Fertilisation & Embryology Authority
https://www.hfea.gov.uk/i-am/i-have-a-genetic-disease-in-my-family/
The Human Fertilisation & Embryology Authority (HFEA) is the UK’s independent regulator for fertility treatment and research using human embryos. It provides information about reproductive options for people affected by genetic conditions, including information on pre-implantation genetic testing, pre-natal testing, and sperm and egg donation.
Resources around frontotemporal dementia (FTD)
FTD talk
FTD talk is a website providing up-to-date information and factsheets about frontotemporal dementia (FTD), including on causes, symptoms, and management. FTD talk hosts a blog about FTD-related research.
Rare Dementia Support
https://www.raredementiasupport.org/
Rare Dementia Support (RDS) is a UK-based service that aims to empower, guide and inform families affected by FTD and other rare dementias. Their goal is to provide social, emotional and practical support. They provide information for families living with inherited or familial FTD, including on areas such as genetic counselling and testing. They also run support groups.
Emotional support and information
People affected by inherited MND might want further information, or support in coping with worries and concerns. Some individuals might find it helpful to talk to a genetic counsellor or a neurologist. GPs may be able to refer people to these services.
There are a variety of resources available for people in need of mental health support. Mind is a charity that provides advice and support. Samaritans aims to provide emotional support to people struggling to cope or at risk of suicide through their telephone helpline. They also have an email and letter writing support service, as well as a self-help app. GPs may also be able to provide mental health support.
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