Project News

We are excited to welcome the entire consortium for the final GO-DS21 General Assembly in Munich, Germany, from 6-8 May 2025. The meeting will start with a networking dinner at the Mercure Hotel Munich Airport on Tuesday, May 6th. On Wednesday morning, May 7th, attendees will be shuttled to the Helmholtz Institute for a full-day meeting. On Thursday, May 8th, the meeting will end at 3:30 pm at the Helmholtz Institute. Please register here for the hybrid meeting, either for face-to-face attendance or for online participation.

Starting with a major event on 19 March 2025 at the European Parliament, the GO-DS21 consortium has been very active again this year in supporting World Down Syndrome Day (WDSD), which is celebrated on 21 March each year – according to 3 x chromosome 21. This year’s message for all governments was “Improve Our Support Systems”. Click on the city names below to view the WDSD activities of the GO-DS21 consortium in 2025.

Brussels: 19 March, whole day, European Parliament, “From Projects to Policies – Including People with Down Syndrome in Europe”
Barcelona: 21 de marzo, 17:30 – 20:15 h, Parc de Recerca Biomèdica de Barcelona , “Día Mundial del síndrome de Down”
Paris: 21 et 22 mars 2025 un colloque à Paris, “Trisomie 21 et Nouvelles technologies”
London: 22 March, 11 am – 4 pm, Francis Crick Institute, “World Down Syndrome Day 2025 Celebration”

David Clarke has a busy life juggling two jobs. Aged 44 and living with Down Syndrome (DS), David is flourishing. “He still lives at home, but has a pretty independent life”, says his father. Read the entire article about David and the results of GO-DS21 research in “Horizon – The EU Research & Innovation Magazine”, which constitutes the official news channel of the European Commission – informing about key outcomes of EU-funded research projects.

The GO-DS21 consortium just launched a major survey to improve the lives of people with Down syndrome (DS). Please open this link to complete the survey! The questionnaire only takes 10-20 minutes to complete, does not ask for personal details, and can be taken in English, French, Spanish or German. It has been launched in preparation for the upcoming World Down Syndrome Day (WDSD) on 21 March 2025.

People with DS (trisomy 21) may be more likely to develop conditions such as obesity and diabetes than their peers in the general population. We are interested in what can be done to help people live healthier lives and reduce the risk for these conditions. This questionnaire asks about how best to encourage a healthy lifestyle, including diet, exercise, weight loss, and liver health.

The 10th GO-DS21 Steering Committee (SC) meeting takes place remotely on the 19th of September 2024 with the objective to prepare the upcoming project review meeting by the European Commission.

We are pleased to introduce the GO-DS21 initiative aiming at understanding comorbidities in Down syndrome and suggest alternatives to reduce their consequences and improve the quality of life of individuals with Down syndrome, please have a look at our video “Let us GO-DS21”

In addition we would like to inform you of the launch of FOODFALL APP, an Educational game about healthy eating developed in collaboration with professionals from the Hospital del Mar, the Down Catalunya association and the support of GO-DS21 that helps people with Down syndrome. The app was launched during the 5^th T21RS conference.

In one month from now, the 6th General Assembly meeting of the GO-DS21 will take place in the picturesque city of Rome from 2-4th of June 2024. Consortium partners will gather to discuss progress on the work since last meeting and give the chance to external advisors to provide their input in order to move the project forward.

Patients and relatives, we are cordially inviting you to attend the following events during the coming weeks to celebrate and support World Down Syndrome Day 2024 (21 March because of 3 copies of chromosome 21 – hence month 3, day 21): The Association Française pour la Recherche sur la Trisomie 21 (AFRT) is organizing a French conference on “Aging Better with Down Syndrome” in Paris on Friday, 15 March (15:30 – 18:00 h) and Saturday, 16 March (9:00 – 17:30 h). In the United Kingdom, people and relatives affected by Down Syndrome are invited to come to The Francis Crick Institute in London on Saturday, 16 March, from 11:00 – 16:00 h. In Spain, the Parc de Recerca Biomèdica de Barcelona (PRBB) is hosting a fun and interactive event in Barcelona on Saturday, 16 March, starting at 10:30 h. Another event takes place at the Institut de Génétique, Biologie Moléculaire et Cellulaire (IGBMC) in Illkirch, France, on Thursday, 21 March, from 14:00 – 17:15 h. It is co-hosted by GO-DS21 coordinator Yann Hérault. Spread the news, help us overcome stereotypes, and post pictures and updates on social media about these events by using the hashtags #LotsOfSocks and #WorldDownSyndromeDay!

Mark your calendars for the upcoming GO-DS21 8th Steering Committee meeting, taking place in the picturesque city of London from 18th to 20th February 2024. We look forward to all work package progress reports and in-depth discussion within the committee.

The 5th General Assembly meeting of the GO-DS21 project took place in Paris from September 7th to 9th, 2023, and it was a fantastic success. We want to express our sincere thanks to all the consortium members and advisors who played a vital role in driving the GO-DS21 project forward with their invaluable contributions. Your commitment and hard work mean the world to us. Let’s keep up the great work and stay motivated as we achieve our goals!

On 09 September 2023, we hosted the mostly French event COMORBIDIT21: “Improving knowledge about obesity and other comorbidities in Down Syndrome or Trisomy 21: The GO-DS21 network at the service of families and associations”.

The GO-DS21 5^th General Assembly meeting is going to take place on 7^th-9^th September 2023 in Paris.

Click here for Registration.

New research from the Institute of Psychiatry, Psychology & Neuroscience (IoPPN) at King’s College London has explored the health experiences of people with Down Syndrome in an effort to better understand how the specific needs of people living with the condition compare to people with other forms of intellectual disability.

The report, published in the Lancet Public Health, is the first of its kind to research multiple morbidity across the lifespan in people with Down Syndrome. Researchers hope that this will help to ensure people living with the syndrome have access to the correct monitoring, support and treatment for health conditions at the right ages.

Click here to read the press release.

Saint Malo, France, November 22-26, 2022 (President, organizer and speaker). (organized by Laurent MEIJER, Masatoshi HAGIWARA & Peter DE DEYN)

Click here to read more.

Watch the GO-DS21 consortium members explain in this video an ambitious pan-European project that investigates the underlying mechanisms and etiology of common Down Syndrome (DS) comorbidities.

Clinicians, pathophysiologists, integrative bioinformaticians, and artificial intelligence computer scientists working to unravel intrinsic and extrinsic mechanisms that impact DS comorbidity (focusing on obesity and intellectual disability). The examination of the pathways and mechanisms involved in comorbidities and multi-morbidities that induce the coexistence of two or more diseases in an individual is of major importance for the effective treatment of patients suffering from DS, obesity, and mental disorders.

Click here to view the video

The Paris Brain Institute (ICM) is currently recruiting a Postdoctoral researcher. Don’t miss out on this great opportunity! For more information on the position and how to apply, please see here.

The new video about the GO-DS21 Clinical Trial in the Jerome Lejeune Institut is available on our #GODS21#youtubechannel now! Watch here:

Researcher Chat this Friday at 3pm with the team from the UK GO-DS21. We’ll be joined by Prof. Andre Strydom, Prof. in Intellectual Disabilities @KingsCollegeLon and Dr. Li Chan, Reader in Molecular Endocrinology at Queen Mary University of London.

Let´s chat here (click on the link bellow)

https://www.facebook.com/DSRFUK/live_videos

The GO-DS21 3^rd General Assembly meeting successfully took place on 8^th-9^th February 2022 via Zoom. Thank you to all consortium members and advisors that help bring the GO-DS21 project forward. Keep up the hard work!

The 4th International Conference of the Trisomy 21 Research Society took place from June 9 to 12, 2022, in Long Beach, California.

The conference provided a platform for sharing the latest insights in basic, clinical, and translational research on Down syndrome.

We are excited to share a video that our partner Institut Jérôme Lejeune has created. Please check out the video below to learn more about their work as well as how research can serve patients and their family. Versions with English and Spanish subtitles will also be available soon.

Click here to view video

The European Commission has now officially launched “Open Research Europe” (ORE), the open access publishing platform for scientific articles presenting results of Horizon 2020 and future Horizon Europe projects. Let’s take advantage of this opportunity!

Join us on 21 March 2021 to actively advocate for the rights of people with Down syndrome! World Down Syndrome Day (WDSD), 21 March, is a global awareness day which has been officially observed by the United Nations since 2012. The date for WDSD being the 21st day of the 3rd month, was selected to signify the uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down syndrome.

The European Brain Council (EBC), the European Federation of Neurological Associations (EFNA), and GAMIAN-Europe are pleased to invite you to save the date for our upcoming Brain Awareness Week event on Patient Engagement in EU-Funded Brain Research Projects, to be held on 16 March 2021 from 12:30-14:00. This event looks to explore the current state of patient engagement in EU-funded brain research projects, looking at the Innovative Medicines Initiative (IMI) and MULTI-ACT as concrete examples and solutions. In discussion with key European Commission officials, we will discuss what has been done and what should be improved in order to guarantee change. Please save the date and keep an eye on your inbox – registration will launch soon! For more info click here.

The “Trisomy 21 Research Society” (T21RS) is collecting vital information to understand the risks and course of COVID-19 among people with Down syndrome. The goal is to learn if people with Down syndrome are more vulnerable or have a different course of illness related to COVID-19 and if their illness is related to their pre-existing health profile. The survey is available in 5 European languages and can be filled out by carers/family mebers or clinicians.

Click here to access the on-line survey.

GO-DS21 partner “European Down Syndrome Association” (EDSA) has created a Coronavirus Special Page where a list with helpful links to resources from organizations in various countries can be found: To Coronavirus Special Page.

The COVID-19 Survey Report May 2020, of GO-DS21 partner “Trisomy 21 Research Society” (T21RS) is available for download here (PDF).

Our GO-DS21 partner “Trisomy 21 Research Society” (T21RS) has published some initial recommendations to protect individuals with Down syndrome against COVID-19: To T21RS recommendations.

GO-DS21 team will invest the next 5 years to help improve the lives of people with DS through the study of mechanisms driving DS comorbidities and the development of innovative clinical guidelines and therapies.