Down’s Syndrome Scotland has been involved with the FEAST project, coordinated by Heidelberg University, and with active participation from the Sant’Anna School of Advanced Studies in Pisa and the University of Gastronomic Sciences in Pollenzo, the aim is to make it easier for all people in Europe to eat healthier and more sustainable food, with a particular interest in vulnerable populations. Within the scope of the project, they aim to actively involve individuals with Down’s Syndrome and their families to gain deeper insights into the nutritional and metabolic challenges they face that require special attention. For this purpose, two questionnaires were designed, one for the person with Down’s Syndrome and one for their caregivers. The results will be used to inform the European Commission on the special needs of persons with Down’s syndrome regarding food to support the design of new policy from which they can benefit.

Parent/Carers can complete the survey here.

Individuals with Down’s syndrome (aged 6+) can complete the survey here.

Find out more about FEAST here.

The Scottish Government are looking to recruit people to sign up to their research programme and take part in research sessions to help shape the future of Scotland’s benefit system.

The Scottish Government are looking to speak to individuals who’ve had experience of benefits in Scotland, including individuals who:

For more information and to register interest in taking part, please click here.


Down’s Syndrome Scotland responds to the latest research findings on premature and avoidable deaths within the learning disability population in Scotland
Eddie McConnell, Chief Executive of Down’s Syndrome Scotland reacted to the research findings with dismay, he said: “We should all be appalled at these findings. It is completely unacceptable in 2025 that people with learning disabilities, including people with Down’s syndrome, are dying prematurely from causes of death that are preventable and avoidable.


For our own community of people with Down’s syndrome, we have known for too long that they are dying prematurely. The original research carried out in 2017 by the Scottish Learning Disability Observatory, revealed that people with Down’s syndrome were dying, on average, 28 years earlier than the general population.
What is additionally concerning in these latest findings is that ‘Down’s syndrome’ is identified as the most commonly recorded cause of death among adults with learning disabilities in Scotland.


We need to understand, with some urgency, why medical practitioners are still listing ‘Down’s syndrome’ as a cause of death. Down’s syndrome is a genetic condition, it is not an illness and it cannot kill you. We are deeply concerned that the actual cause of death may be going unrecorded in many of these premature deaths and this leads us to question whether the presenting health condition has been identified and treated, in many of these cases. It is entirely possible that many of these individuals could have
lived longer had their health condition (and not their disability) been fully diagnosed and appropriately treated.


He continued: “When we speak with families, they tell us that there are many clinicians and health professionals who respond positively and provide appropriate care and treatment. However, the experience of other families is not so positive with many of them telling us that medical practitioners and health professionals often see a person with Down’s syndrome instead of seeing a patient who has acute and urgent health needs.


People with Down’s syndrome deserve equal access to good quality healthcare and medical treatment. These new findings suggest that the conflation between disability and health by medical practitioners is still significantly prevalent and could be masking the identification of underlying health conditions and their subsequent treatment.
It is evident from this research, that we still have much to do to challenge perceptions and change practice – many of these premature deaths are avoidable, preventable and treatable.


For the families left behind, there remain many unanswered questions about what happened to their loved ones in their final days of their lives.
We should all be greatly concerned at what these findings are telling us.”

To read the full news release from SLDO (Scottish Learning Disability Observatory) here and for the SLDO Mortality Briefing here

We are delighted to welcome the publication of the Scottish Standard Care Pathway for Babies Born with Down’s syndrome and pleased to have collaborated with our colleagues across the NHS community in Scotland in developing this critical resource. The pathway is intended to guide the initial care for a newborn baby with a diagnosis of Down’s syndrome. It is intended for use by all health professionals involved in the care of babies with Down’s syndrome across Scotland . Having a pathway in place means health professionals can have the confidence in sharing the news that the baby has Down’s syndrome, using the right language.  It will also improve their understanding around caring for babies born with Down’s syndrome and supporting them and their parents through the neonatal period.

Download resource here

Down Syndrome Regression Disorder (DSRD) is a term used to describe the sudden significant deterioration/loss of previously acquired motor, language and behaviour skills, most often preceded by a potential emotional or environmental trigger, such as a change in school or family circumstances not explained by autism or dementia. Although some therapies have been tried and some are still under research, no definitive treatments have been approved.

This disorder is a separate entity to dementia and to autism – however, poor awareness amongst professionals of DSRD along with some of the overlap of symptoms with autism and dementia, has meant that little is known about the true incidence and therefore management of it.

Down’s Syndrome Scotland are very aware of individuals with Down’s syndrome that appear to regress and families are concerned and confused as to why there doesn’t seem to be any explanation of why this has happened. The condition was also a significant area of discussion at this year’s World Down Syndrome Congress which highlighted that it is still not well understood and there is limited awareness and understanding amongst healthcare professionals.  

We are therefore pleased to share details of a UK study which hopes that by identifying the number of individuals with DSRD in the United Kingdom, it will help to improve knowledge and awareness of this condition and in turn, will lead to research on the management of this condition, in the UK, in the future.

A survey will look at the numbers of people aged between 10 – 45 years old who may have Down Syndrome Regression Disorder (DSRD). i.e. individuals that have a loss of previously acquired skills not associated with a diagnosis of autism or Alzheimer’s disease.

The research team are gathering information, including a detailed survey of symptoms, to build a clearer picture of how many people may be affected and will be looking to use this information to demonstrate the need for more awareness, education and research into this specialised but really important area.

The online survey is being conducted by Drs Rachamim and Seenivasan and should only take around five minutes to complete.

The questions are aimed at identifying any potential triggers like difficult experiences and challenging issues that the young person has encountered in the past.

In the United Kingdom, the exact occurrence of this condition remains unknown. A series of symptoms and triggering factors have been developed recently, by researchers and clinicians, that are very helpful in potentially identifying this condition. The survey questions relate to these series of symptoms and triggers that could possibly help in identifying DSRD.

Further information about the study can be found by clicking here: Participant Information Sheet

Click here to take part in the survey: DSRD – Delphi Survey (parents/carers version)

About the research team

Dr Ella Rachamim

Specialist doctor in Community Paediatrics,

Edgware Community Hospital,

Barnet (Royal Free Hospital Trust)

Dr. Abinaya Seenivasan

ST5, Paediatric Neurology GRID,

Royal Manchester Children’s Hospital.

Scottish Disability Sport have introduced their first ever national survey and would like to hear from adults aged 16+ living with a disability or long-term condition in Scotland.

Results from the survey will be used to raise awareness and address inequalities experienced by people living in Scotland with a disability or a long-term health condition when trying to be more physically active.

Take part in the survey before Sunday 8th December.

You can find out more and access the survey here: Scottish Disability Sport National Survey 2024

Researchers from the London School of Hygiene & Tropical Medicine (LSHTM) with funding from the Down’s Syndrome Research Foundation UK are looking for participants to take part in research exploring the menstrual health of teenagers with Down’s syndrome in the UK.

Periods can be a confusing and challenging time for any teenager, and girls and young women with Down’s syndrome may have additional needs and experiences. To help better understand these needs the research team are conducting an anonymous (private) online survey to learn more about how girls and young women with Down’s syndrome and their families prepare for and manage their periods.

If you are the caregiver of a girl or young woman aged 10-19 with Down’s syndrome you can participate, even if they haven’t started their periods yet.

You can access the survey at this link: Menstrual Health Survey

The research team encourage participants to complete the survey on a laptop using the Google Chrome browser.

Click here to learn more about research and the team leading this study.

With funding from the Motability Foundation, Mencap are inviting adults (age 18+) with a learning disability who live in the UK to participate in their research project about public transport.

The Big Public Transport Survey was co-produced with people with a learning disability and asks questions about things that are important to them, including how public transport barriers impact on people’s wellbeing, access to community and access to paid work.

The survey is formatted in Easy Read and includes audio clips to listen to questions out loud.

You can access the survey online at this link: Big Public Transport Survey or email research@mencap.org.uk if you would like a paper copy of the survey instead.

Mencap will write a report about what they find out and Mencap hopes that the findings will help us all to provide better support to people with a learning disability.

For enquiries or more information about the survey including Easy Read resources and questions and answers, please click here or email research@mencap.org.uk.

Researchers at the Tizard Centre, at the University of Kent are looking for participants to take part in a research study that aims to explore the knowledge and experiences of the Criminal Injuries Compensation Scheme (CICS) of professionals, staff carers and/or family carers of people with learning disabilities.

You don’t have to have any particular knowledge or previous experience to complete the survey. The researchers are interested in everyone’s views.

Participants wanted:

Are you a carer for a person with a learning disability?

Are you a member of staff that supports people with learning disabilities?

Are you a professional that has worked to support a person with a learning disability?

Are you based in England, Wales or Scotland?

Participants will be asked to complete an anonymous online survey which should take approximately 15 minutes to complete.

Please click here to register to take part and access more information about the study, including project objectives, participant consent and contact details for the project team.