MetabERN : questionnaire à destination des patients

Dear Patient Representative,


On behalf of the WP 6 team, the coordination office and the patient board medical liaison, we hope you are keeping well, and we would like to thank you for your effort in sharing our survey on the Perception of Social Assistance in the Daily Life of Rare Metabolic Patients so far.

This is a gentle reminder. We would really appreciate it if you could send out a reminder to those that you have shared the survey with so far, or if you have not yet shared it, to please share it with the patients/caregivers in your association and with other patient associations in your country and around Europe. 


  1. Please share it via your social media accounts. However, when doing so, please highlight that the survey is only open to European rare metabolic patients.
  2. Please do not forget to share with us the number of people you have shared the survey with. In terms of sharing it via social media, we understand that it is difficult to know exactly how many it has been shared with, but most posts have analytics. These numbers will give us somewhat of an indication as to how many people it reached, so please share those numbers with us. 




What are the social assistance needs of Rare Metabolic Patients?

Together we can find out!

Find it HERE 













Deadline: 07 June 2020

Time commitment required: 15/20 minutes

WHO is this survey for?

It is for ALL rare metabolic patients and/or their caregivers!

What can YOU do?

ü Answer the survey about you/your child/your loved one. Simply share your experience anonymously;

ü Disseminate this project among your members and other rare metabolic associations in your country;

üReach out to your metabolic specialists and ask them to share the survey link with their other patients;

ü Share social media posts about this survey on your European-only social media channels.

ü Please keep a log of how many people you have shared the survey with, and that you share this number with us


WHY should you take time to participate?

You might be wondering “Isn’t this just another survey?”. No, it is not. Here is WHY:

  1. This survey covers a wide spectrum of pressing topics (from social services/needs, school & employment, child/adult transitioning and rights of the disabled) across ALL rare metabolic diseases;
  2. It gathers country-specific data and will allow for a European-wide comparative study. To make this possible, the survey has been translated and adapted to nearly all the European languages.
  3. Advocate for rare disease patient needs. Help us gather the information that can bring about REAL change!

To make this successful we need YOU!


If you have further questions please contact or

A project led by MetabERN (WP6: Research) and made possible by the European Rare Metabolic Patient Community.