DiS – Rare is a study that aims at generating insights into digital health solutions for patients with neuromuscular diseases (NMDs). Your participation in this study will help to create digital solutions that are patient and provider friendly.

The first part of the study is a CanGoRare survey which is a 10 min online survey ranking important research topics concerning NMDs. The survey is conducted anonymously.

Eligibility: Iindividuals who work full-time, part-time, or volunteer for any of the following interest groups in the field of rare/neuromuscular diseases:

  • Patient organization
  • Patient registry
  • Medical society
  • Specialized clinic or centre for rare/neuromuscular diseases
  • National or international research network
  • Foundation
  • Other non-profit organization

How to patriciate: CanGoRare pre-study

Time frame: 9/11/22 – 22/11/22


Financial and other benefits: It should be noted that no personal benefit can be expected from participating in the survey.

Before the survey is conducted, a written declaration of consent is obtained from you directly in the questionnaire.


All participation is greatly appreciated :)