Skip to content

Eurordis - Rare Disease Europe

Uber uns

Unsere Leitung

Unser Netzwerk

Richtlinie zu seltenen Erkrankungen

Schwerpunktbereiche

Querschnittsbereiche

Über seltene Erkrankungen

Über Arzneimittel Für Seltene Erkrankungen

Finden Sie Unterstützung

Mit EURORDIS

Nehmen Sie an Unseren Aktivitäten Teil

Besuchen Sie Unsere Veranstaltungen

Generic filters
Exact matches only
Search in title
Search in content
Search in excerpt
Nachricht
Multimedia
Ereignisse
Mitglieder
Ressourcen
Kontakt
Zugangsmöglichkeiten
Donate

Register to the Rare Barometer panel to participate in our surveys and receive their results!

Register
00   000

people have registered to Rare Barometer

1

Register to Rare Barometer

2

Receive invitations to surveys

3

Take part in the survey

4

Receive results

Who can join?

This global survey initiative is open to anyone from any country in the world who is living with a rare disease, as well their family members and carers. The more people who respond and share their experiences, the more powerful our voice will be! All responses are anonymous and will be kept in secure storage only accessible to our research team.

Participants can register from any country in the world.

Image ALT text

How your voice makes a difference

Rare Barometer transforms your opinions and experiences about topics that directly affect you into facts and figures that can be shared with patient organisations, policy makers and the wider public, to drive real change for people living with a rare disease.


Our surveys:


Inform policy and decision makers on what it really means to live with a rare disease

Actively involve patients in research on the topics that matter most to them

Create a cross-border community of people affected by a rare disease who act collectively to bring about change

Survey results

View all survey results

Testimony

We took part in the Rare Barometer survey on diagnosis and had enough participants living with HHT to access the results for France, Germany and Italy. We use our results to plan our future actions based on the needs that emerged from the survey. Claudia Croccione, HHT Europe

Testimony

I was involved in the survey on the diagnosis of rare diseases from the earliest stages of the project, and this enabled me to check that the questions were well adapted to the Italian context and to rare diseases as a whole. Simona Bellagambi, Uniamo - Rare Diseases Italy

Testimony

I was exhausted and overwhelmed in my role as a patient with autoimmune polyendocrine syndrome-type 1, caregiver and advocate. The report of the Rare Barometer survey on the daily impact of rare diseases provided me with validation and a new frame of reference. Marliena

Confidentiality

This programme is owned independently by EURORDIS-Rare Diseases Europe and is a non-profit initiative; no commercial use of your details will be made at any time.

Confidentiality

Governance

Decisions on future topics to be explored through the programme are made by EURORDIS-Rare Diseases Europe. All Rare Barometer surveys are designed by the Rare Barometer team based on the inputs of an ad hoc Topic Expert Committee comprised of expert individuals from a range of backgrounds (patient representatives, academia, policy).

Governance

Contact the Rare Barometer team

If you have any questions, or would like to discuss opportunities for collaborating or supporting the Rare Barometer programme, please contact:

Jessie Dubief,
Social Research Director & Rare Barometer lead

Jessie Dubief 2023

Are you from a company or research? Click here to learn more about collaborating with us