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  • Writer's pictureFEST

A Consensus Paper to promote the rights of people living with Skeletal Dysplasias with Dwarfism

Updated: Dec 6, 2021

Over the last two years, FEST members have been actively involved in the development of a Consensus Paper entitled For an EU that cares about Achondroplasia and other Skeletal Dysplasias with Dwarfism (ASDD).

Whilst we acknowledge that the UK is no longer part of the European Union we nevertheless see it as important to our advocacy work to seek ways to work with advocacy groups across the world. To be part of developing this consensus paper was one such opportunity.

The paper was launched on Thursday 28th October 2021, A landmark day not only for a significant document to be raised at European level but also to bring together a community of advocacy organisations with the shared purpose of improving the lived experience of people with ASDD. It was the first forum for political exchange on ASDD, in which we hope to set the cornerstone to tackle the needs of people with these conditions across all Europe.

The fight for equality and recognition of the social rights of all people with disabilities has advanced notably in recent years. Progress is being made globally, including with the enactment of the UN Convention on the Rights of Persons with Disabilities1, providing a framework for the establishment of common goals and the defence of their human rights. However, the needs of people with ASDD have been widely neglected so far.

ASDD advocacy organisations from across Europe joined with MEPs Petar Vitanov, Jonás Fernández, Stelios Kympouropoulos, Alex Agius Saliba and Rosa Estaràs Ferragut as well as renowned experts including Professor Tom Shakespeare, Co-director of the International Centre for Evidence in Disability at LSHTM and Valérie Cormier-Daire, Centre de référence Maladies Osseuses Constitutionnelles (MOC) to discuss the topic in the context of the EU Disability Strategy. Stephanie Birch from FEST and Estefanía González, Fundación ALPE Acondroplasia spoke on behalf of the advocacy organisations.

Despite the progress achieved in recent years on the fight for equality and recognition of the social rights of all people with disabilities, including the EU Disability Strategy, the European Union has still failed to acknowledge the specific needs of a long neglected and stigmatised community: people with Achondroplasia and other Skeletal Dysplasias with Dwarfism (ASDD).

ASDDs are not only a range of health conditions but also disabilities with a strong social burden behind them. The shameful historical stigmatisation translates into numerous challenges for people with ASDD. In addition to the varied and serious health problems, which are often under-researched and under-recognised, they still suffer from severe discrimination at school and in the workplace.

Against this background, ASDD advocacy organisations are raising their voice jointly to demand a long due solution: a social Europe that delivers for people with ASDD, establishing common standards, increased cooperation and providing real change.

The ASDD EU initiative comprises groups from organisations across Europe:

As a result of these joint efforts, they have produced the first Consensus Paper identifying the main challenges and needs to be addressed by EU policies in the context of the Health and Disability policies.

The understanding of these multifaceted conditions, the eradication of prejudices about them and the pursuit of policy solutions are essential to ensure that people with ASDD are treated with dignity and justice.

The key priorities for EU action on ASDD are outlined as follows:

1. Social Stigma and its consequences.

2. Recognition of the condition and access to essential services.

3. Right to healthcare, early and adult care.

4. Accessibility to spaces, products and services.

5. Equal education opportunities.

6. Support to employment and the labour market.

This launch event was significant because we saw first hand that :

1. The European Commission needs our input. We are in the perfect moment to do more work at European level and make our voice heard

2. The community of people with ASDD is looking for a commonplace to work and exchange. The groups in the chat were asking for opportunities to be involved.

This makes it a huge success and only reinforces the need for us to continue our work. We are pleased to see the work and efforts of the last two years are finally being publicly shared and recognised. FEST’s ambition now is to seek ways in which we can present this paper in a UK policy making context and to influence disability strategy. You can read the full document by clicking on the link below. If you are inspired to join our efforts to improve the lives of those with ASDD then please do get in contact.

FEST would like to convey our gratitude to Christina Fuentes Antrás, Alberto Domingo Bayarri and Kit Greenop of the RPP group who worked with the advocacy groups to facilitate the production of the consensus paper.

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