Tuesday, June 18, 2024

Rare Diseases Survey by EURORDIS to Explore Social Participation and Independent Living

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Rare Barometer, a key survey initiative by EURORDIS – Rare Diseases Europe, will unveil a significant new survey focusing on social participation and independent living among individuals affected by rare diseases. This survey will provide invaluable insights into the everyday challenges and barriers faced by those within this community, aiming to enhance their quality of life and societal integration. Available in 25 languages, the survey will be accessible to all people living with any rare disease and their family members globally, facilitating a comprehensive understanding of their needs and experiences.

Rare diseases, characterized by their low prevalence but high diversity, often require specialized healthcare and social services. Patients typically need support from various health professionals and might utilize services such as rehabilitation, day-care, and adapted schools and workplaces. These services are crucial not only for the medical treatment of rare diseases but also for supporting patients’ ability to participate fully in society. This new survey will explore how these needs are being met across different regions and what additional supports could be beneficial.

Upcoming EURORDIS Survey to Address Social Vulnerabilities and Enhance Advocacy in Rare Diseases

The data collected from the upcoming survey will serve a dual purpose. Firstly, it will help EURORDIS – Rare Diseases Europe and its member organizations to quantify the social vulnerabilities faced by individuals with rare diseases. Secondly, it will assist in crafting targeted advocacy strategies and actions aimed at reducing these vulnerabilities. By gathering detailed information on the levels of social participation and the factors influencing it, the survey will identify the main barriers to accessing social activities and disability rights.

This effort is supported by a committee of topic experts, including specialists in social participation, independent living, disability, policy-making, and patient advocacy. Their expertise has been instrumental in designing a questionnaire that not only captures the necessary information but also respects the nuances of the respondents’ experiences.

Rare Diseases

EURORDIS Invites Rare Diseases Community to Participate in Influential Survey and Promote Inclusion

Members of the Rare Barometer panel will soon receive invitations to participate in this pivotal survey. Those who are not members yet but wish to contribute can stay updated through EURORDIS’s newsletter and social media channels or by visiting the dedicated webpage for announcements regarding the official survey launch.

Moreover, EURORDIS encourages everyone within the rare disease community to promote the survey using a communication toolkit, which will be available in seven languages. This toolkit will help spread the word and ensure that a wide range of voices are heard, making the survey’s findings as impactful as possible.


Resource: European Organisation for Rare Diseases, May 14, 2024

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