ERN ReCONNET Transition of care Survey

 

Your Experience Can Help Improve Care Across Europe: participate now in the ERN ReCONNET Transition Survey

 

ERN ReCONNET has launched a European-wide survey to better understand the transition process from paediatric to adult healthcare for people living with rare connective tissue diseases (rCTDs).

 

Why this survey matters

Transitioning from paediatric to adult care can be a complex and emotional process for young people with rare diseases and their families. This survey aims to collect first-hand experiences, challenges, and needs from patients and carers across Europe in order to build a more supportive and effective transition model.

 

Your contribution is crucial. The feedback gathered will guide the development of recommendations and tools to ensure that every young person with an rCTD receives appropriate support when moving to adult care services.

 

 

About the survey

• 🌍 Available in 20 European languages
• ⏱️ Takes around 15 minutes to complete
• 💬 You can pause and return to it at any time

By sharing your experience, you will help ERN ReCONNET and the broader rare disease community improve the quality of transitional care in rCTDs across Europe.

 

Take the survey

You can access the survey in your preferred language below:

• Croatian
• Czech
• Dutch
• English
• Estonian
• Finnish
• French
• German
• Greek
• Hungarian
• Italian
• Latvian
• Maltese
• Polish
• Portuguese
• Romanian
• Slovenian
• Slovakian
• Spanish
• Swedish

 

Make your voice heard

Your experience can make a real difference. By participating in this survey, you will contribute to shaping a more inclusive and patient-centred healthcare system for people living with rare connective tissue diseases.

👉 Take part today and help us improve the transition journey for future generations.