SURVEY – Perception of Social Assistance in the Daily Life of Rare Metabolic Patients

Dear Patient

We are happy to inform you that the anonymous online survey to asses “Perception of Social Assistance in the Daily Life of Rare Metabolic Patients” has been launched in 10 languages.











Deadline: 07/06/2020

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?

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

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

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

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

WHY should you take time to participate?

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

  • 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;
  • 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.
  • Advocate for rare disease patient needs. Help us gather the information that can bring about REAL change!

To make this successful we need YOU!

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