Useful websites

The following links and organisations may be useful for further information on a range of topics. This includes organisations such as Genetic Alliance UK, who provide information to those affected by genetic conditions, and Europe PubMed Central's EvidenceFinder that enables you to search for evidence on unproven treatments.


ALSUntangled helps people living with ALS (the most common form of MND) to review alternative and unproven treatments. You can view the completed reviews on aimspro and propofol as well as vote for treatments that you would like to be investigated. We proudly sponsor ALSUntangled. Follow @ALSUntangled on Twitter

Association of Medical Research Charities

The Association of Medical Research Charities (AMRC) is a national membership organisation of leading medical and health research charities in the UK. We are a member of the AMRC. Follow @AMRC on Twitter

Cochrane library

The Cochrane library is an independent high-quality evidence resource for healthcare decision making. You can search the database for evidence on certain treatments, as well as investigating all the information on a particular disease. Follow @CochraneLibrary on Twitter


The European Network for the Cure of ALS (ENCALS) aims to develop a European trial network and initiate collaborations in Europe. They also hold a two-day annual meeting each year. Follow #ENCALS on Twitter

Europe PubMed Central

A unique, free, information resource for biomedical and health researchers. All our research grants from 2011 onwards are required to submit all publications to Europe PubMed Central (Europe PMC) by means of open access. Follow @EuropePMC_news on Twitter

Frontotemporal Dementia Support Group

The Frontotemporal Dementia Support group (FTDSG) is particularly directed to carers who are coping with behavioural changes in a family member with FTD. This support group provides information and support to those affected by FTD. You can also subscribe to their newsletter or join their discussion forum.

Familial Frontotemporal Dementia Support Group

The familial Frontotemporal Dementia Support Group (fFTDSG) offers information, advice and social opportunities for people affected by inherited forms of FTD. This group holds a national meeting once a year in London.

Frontotemporal Dementia (FTD) Talk

The FTD talk website presents jargon free research updates for the whole frontotemporal dementia community. The website explains what FTD is and provides a number of fact sheets - including one on familial FTD. Follow @FTDtalk on Twitter

Genetic Alliance UK

A national charity of over 150 patient organisations supporting all those affected by genetic conditions. There aim is to improve the lives of people affected by genetic conditions by ensuring that high quality services and information are available to all who need them. We are a member of Genetic Alliance UK. Follow @GeneticAll_UK on Twitter.

International Alliance of ALS/MND Associations

The International Alliance of ALS/MND Associations provides an international community for individual ALS/MND Associations from around the world. We are a member of the International Alliance. Follow @ALSMNDAlliance on Twitter

Sense about Science

Sense about Science are a charitable trust that equips people to make sense of science and evidence. They point out the facts of science stories covered in the news. We helped them produce an information booklet on unproven treatments. Follow @senseaboutsci on Twitter

UK MND Clinical Studies Group

The UK MND CSG is comprised of leading MND neurologists, palliative care specialists, patient and carer representatives and other healthcare professionals with an interest in MND clinical research, including the MND Association's Director of Research and Head of Research. The Group’s mission is to bring together the expertise to develop and improve both the quality and the number of MND research studies available for people living with MND to participate in nationally. Follow @UK_mnd_CSG on Twitter


For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262