Public Benefit Organization (ANBI)

On this page, you will find an overview of information about the Trisomy 21 Research Society (T21RS) that has to be published according to the rules and regulations of the Dutch Tax Administration (Belastingdienst) for Public Benefit Organisations. T21RS is recognized by the Dutch Tax Administration as Public Benefit Organisation (in Dutch: Algemeen Nut Beogende Instelling, ANBI).

Trisomy 21 Research Society (T21RS) is a non-profit society (in Dutch: vereniging) established under the laws of the Netherlands, having its registered office in the municipality of Groningen and its principal place of business over there at Hanzeplein 1 (9713 GZ), listed in the trade register under number 60501162 (KvK Netherlands Chamber of Commerce number). The articles of association, i.e. the statute, can be downloaded here.

Statutory name
Trisomy 21 Research Society

Also known as
T21RS

RSIN identification number
853938283

Corporate seat
Hanzeplein 1, 9713 GZ Groningen, The Netherlands

Contact details
Trisomy 21 Research Society: info@t21rs.org

Technical secretariat: secretariatecnicat21rs@bcocongresos.com

Aims

The society is a non-profit scientific organisation, for the promotion of research on Down Syndrome (trisomy 21). For this purpose the society aims: a) to facilitate the interaction between scientists by holding scientific meetings, b) to promote education and training of young researchers (students, PhD students and postdoctoral researchers) interested in Down Syndrome, c) to promote the understanding of, and involvement in Down Syndrome research among the general public, d) to promote the interactions between scientists and patient and family associations, and e) to promote the interactions between scientists and (pharmaceutical) industries.

Executive Board

  • President
    Dr. André Strydom, King’s College, London, United Kingdom
  • Secretary
    Dr. Maria Martinez de Lagran, Center for Genomic Regulation, Barcelona, Spain
  • Treasurer
    Dr. Alain Dekker, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands

Other board members (committee chairs)

  • Dr. Sandra Guidi (Chairperson Committee for Education and Training), University of Bologna, Italy
  • Dr. Maria Carmona Iragui (Chairperson Committee for Science & Society), Hospital Sant Pau, Barcelona, Spain
  • Dr. Jean Delabar (Chairperson Committee for Sponsoring), Brain and Spine Institute, Paris, France
  • Dr. Lizzy Fisher (Chairperson Committee for Preclinical Research), University College London, London, United Kingdom
  • Dr. Alberto Costa (Chairperson Committee for Clinical Research), Case Western Reserve University, Cleveland, Ohio, USA
  • Dr. Elizabeth Head (Chairperson Programme Committee), University of California, Irvine, California, USA

Remuneration policy

Executive Board members do not get paid for their activities for T21RS. They are entitled to reimbursement of costs incurred in the executing their duties and to non-excessive attendance fees. Board members commit themselves voluntarily and free of charge. T21RS does not currently employ any personnel.

Current policy plan
In the letter below (dated February 2020), the president of T21RS (Dr. A. Strydom) summarizes the policy plan for 2020/2021.

We are at an important stage in the society’s development.  Over the past few decades, members of the society have laid the foundations of knowledge on which others can build. They have successfully lobbied for increased research support, and there is finally a critical mass of researchers, tools and interest to tackle several aspects of trisomy 21 that will ultimately help to address conditions that often co-occur with Down syndrome. Soon, there will also be more data and new resources available due to increased funding for Down syndrome research through funding via the NIH’s INCLUDE programs and recent awards by the EU via their JPND and Horizon 2020 calls.  Such growth in activity is cause for celebration – the research community should be proud of these achievements and honour those that worked to achieve them.

Much of our success is due to the support from several Down syndrome organisations from across the world. We need to remain closely aligned with the Down syndrome community to ensure we maintain a focus on their needs. With that in mind, one of our important goals over the next few years will be to strengthen existing partnerships by encouraging active input from our supporting partners. This will be led by the Science and Society committee. We will continue to encourage a strong presence for people with Down syndrome, their carers and organisations at our next conference in California in 2021. We will build on links with other groups and organisations, particularly those outside of Europe and the US, and we plan to initiate new regional chapters in other parts of the world. The executive will regularly consult with its members for ideas and connections on how to expand the society beyond our traditional base.

We will continue to support the Down syndrome research community to ensure equitable and maximal use of new biobanks, tools and data sources, whilst being sensitive to the regulatory aspects common to research across countries and continents. We will build on ongoing efforts by the clinical and preclinical committees to catalogue potential resources, compare and standardize methods where necessary, and encourage an open approach to data, tools and research findings. To support these activities, we will be providing the committees with an annual budget, and to ensure increased visibility and dissemination we are working on a new website, and more active use of social media.

Finally, with a maturing field there are new responsibilities, including the need for active engagement in translation and implementation of new discoveries. We will work to establish an Industry workgroup as vehicle to strengthen links between the society, its members, and potential industry partners. In addition to this, we will strengthen links with clinical groups to support efforts to develop guidance and implementation.

T21RS has from the beginning aimed to build a strong future by developing and supporting young investigators. We will ensure that the society continues to encourage the development of young investigators though our ongoing young investigator programmes, travel and conference grants and prizes. The education committee will establish a series of regular webinars to engage the growing cadre of established and emerging Down syndrome researchers.

The next few years is an important and exciting time to be part of the Down syndrome research community; through these activities the T21RS aims to make a real difference.

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