Rare Barometer Survey

Rare-Barometer-Survey

Why take the Rare Barometer Survey? Living with Hereditary Hemorrhagic Telangiectasia (HHT) presents unique challenges that can impact various aspects of life. To better understand and address these challenges, EURORDIS – a European Organisation for Rare Diseases – has launched a significant initiative: the Rare Barometer Survey titled “Impact on Living with a Rare Disease.” This survey is a crucial tool that aims to gather insights directly from patients and their families to inform policymakers, healthcare providers, and the broader community about the real-world impacts of rare diseases like HHT.

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MAKE YOUR VOICE HEARD

Your experiences and insights are invaluable. By participating in this survey, you can:

  • Contribute to a broader understanding of the daily realities of living with HHT.
  • Help shape future policies and initiatives that aim to improve the quality of life for rare disease patients.
  • Ensure that the voices of HHT patients are included in discussions about healthcare, support services, and research priorities.
SURVEY DETAILS

The survey is designed to be comprehensive yet straightforward, ensuring that your valuable input is captured effectively. It covers various aspects of living with a rare disease, including medical care, social support, and personal well-being.

  • Title: Impact on Living with a Rare Disease
  • Organized by: EURORDIS – European Organisation for Rare Diseases
  • Format: Online survey

For more information and to participate, please visit THIS LINK

ABOUT RARE BAROMETER SURVEY INITIATIVE

Rare Barometer is a survey initiative that robustly collects the experiences and opinions of people living with a rare disease and their close family members on topics that directly affect them. 

This programme is run independently by EURORDIS-Rare Diseases Europe and is a not-for-profit initiative. It conducts one to three studies each year and hosts a survey panel of more than 20,000 people who agreed to receive email invitations to participate in surveys and studies conducted by EURORDIS-Rare Diseases Europe. 

The objective is to transform the opinions and experiences of people living with a rare disease and their close family members into facts and figures that can be shared with a wider public and with decision-makers.

2024 SURVEYS

2024 Surveys conducted by Rare Barometer.

NEWBORN SCREENING – completed and published on website. LINK

CONDUCTING SUREY ON THE IMPACT ON LIVING WITH A RARE DISEASELINK

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70% of rare diseases are genetic

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73% of rare diseases, the first symptoms usually appear before or during infancy.

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69% of peoples rare disease was diagnosed more than 5 years after the first medical encounter

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68% the symptoms of the rare disease are improvin

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83% of parents of people living with a rare disease would have liked their child to be diagnosed at birth