Monday, July 15, 2024

Rare Barometer Survey on Rare Diseases and Social Participation Launched

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EURORDIS-Rare Diseases Europe launched the Rare Barometer survey to explore the impact of rare diseases on everyday life. This global survey is open to individuals living with a rare disease and their family members and is available in 25 languages. Previous Rare Barometer studies have highlighted significant challenges and gaps in accessing care and support for those with rare diseases. The new survey aims to delve deeper into these issues, focusing on societal obstacles from a human rights perspective.

The Rare Barometer survey investigates the societal barriers faced by people living with rare diseases. These barriers affect various aspects of life, including work, education, and social support. Individuals with rare diseases often experience unequal treatment and a lack of recognition for their conditions and disabilities. By collecting insights from the rare disease community, the survey aims to provide a clearer view of these challenges.

EURORDIS Launches Survey to Explore Daily Life Challenges for Rare Diseases Patients

Jessie Dubief, EURORDIS Social Research Director and Rare Barometer Programme Lead, commented on the survey launch, emphasizing its focus on day-to-day dimensions of life with a rare condition. Dubief stated, “Our new survey aims to delve into the day-to-day dimensions of life with a rare condition, such as participation in school and employment, the types of disabilities experienced by people with a rare disease, and their access to social rights.

By collecting insights from the rare disease community, we hope to have a clearer view of the barriers they face. The experiences and perspectives shared by respondents will be crucial to inform our advocacy efforts to make sure that people with a rare disease can live their lives to their full potential.”

Raquel Castro, EURORDIS Social Policy and Initiatives Director, also commented on the survey launch. Castro highlighted the importance of recognizing societal barriers that impact the rare disease community. She said, “It is crucial to recognize that societal barriers significantly impact our community. Instead of solely focusing on fixing medical conditions, we must also acknowledge and address the broader societal factors that create barriers and challenges for people living with rare diseases and their families. Only then can we effectively advocate for the changes needed to ensure everyone with a rare disease can live to their fullest potential?”

Rare Diseases

Rare Barometer Survey to Enhance Social Participation and Rights for Rare Disease Patients

The Rare Barometer survey aims to generate new knowledge about the social participation and independent living of people with rare diseases worldwide. Developed with a committee of experts, including patient representatives, the survey will contribute to policy recommendations to enhance social participation and improve access to social rights for all people with rare diseases. This comprehensive approach ensures that the perspectives of those directly affected by rare diseases are included in the development of policies that aim to improve their quality of life.

The Rare Barometer survey is a critical tool for understanding and addressing the societal challenges faced by individuals with rare diseases. By focusing on the human rights perspective and gathering insights from the rare disease community, the survey aims to inform advocacy efforts and drive policy changes that ensure individuals with rare diseases can live their lives to the fullest potential. Researchers, policymakers, and healthcare providers are encouraged to utilize the findings of this survey to support and improve the lives of those affected by rare diseases.


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Resource: Rare Diseases Europe, July 10, 2024

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