Rare Barometer: ERKNet for Patients
The Rare Barometer by EURORDIS is a strategic initiative designed to collect and analyze the experiences, perspectives, and needs of people (and their relatives) with rare diseases in Europe. Through surveys, it gathers valuable insights on critical areas such as healthcare, research, social support, and quality of life.
This data ensures that the voices of the rare disease community are effectively represented in policy discussions and decision-making processes. Open to participation from patients, families, and stakeholders across multiple countries and languages, the Rare Barometer fosters meaningful change and drives improvements in care, services, and awareness for the rare disease community on a global scale.
Are you curious about the Rare Barometer Surveys by EURORDIS and want to get involved? ➡️ Click here
Below you can find the survey results tailored to the Rare Kidney Community
Around 30 million people in Europe live with a rare disease, facing significant barriers to social and independent living rights. Recognizing these disabilities is vital for enabling full participation in society. A Rare Barometer survey conducted between July and September 2024, with 9,591 participants, including 990 responses from patients with a rare kidney condition highlights these disabilities, challenges in obtaining recognition and support, and societal participation limits, especially at school and work.
Check out the full survey results tailored to the ERKNet Community right here
Click here to download the Factsheet with key European results in 25 languages
Early diagnosis is essential for individuals living with a rare disease. It enables families to plan effective care and treatments, prevent serious disabilities, and potentially save lives. Newborn screening, the systematic testing of babies shortly after birth, greatly improves access to early diagnosis, ensuring timely care and follow-up.
Despite differences in screening practices across Europe, the rare disease community strongly supports newborn screening: 95% of individuals surveyed by Rare Barometer previously favored screening newborns for rare diseases.
In collaboration with the Screen4Care project, Rare Barometer's latest survey further explores the perspectives of rare disease patients and their families regarding newborn screening for their specific conditions. These valuable insights directly inform and enhance newborn screening programmes across Europe.
Check out the full survey results tailored to the ERKNet Community right here
Click here to download the Factsheet with key European results in 24 languages
The Journey to Diagnosis Survey by EURORDIS explores the challenges and experiences of individuals living with rare diseases as they navigate the path to receiving a diagnosis. Including 1,158 responses from patients with a rare kidney condition, the survey highlights delays, misdiagnoses, and barriers in the diagnostic process, providing critical insights into the unmet needs of the rare disease community.
Read the factsheet to find out more, right here
Here you can find the survey, for more input