Questionnaire for the preparation of webinars on MECP2 gene duplication syndrome

"DupMECP2.eu - Lasst uns MDS heilen", in collaboration with other international organisations, is working with Ionis Pharmaceuticals on a series of webinars designed to highlight key topics in drug development. Together, we want to ensure that the patient community has the education, support and resources they need to understand drug development for rare diseases. To this end, Ionis is developing a Clinical Readiness Webinar Series.

In order to specifically target the content of future webinars and adapt it to families' questions, we are gathering feedback from the MECP2 duplication syndrome community.

Take the opportunity to help shape the webinars to better meet any expectations you may have. The survey is anonymous and should take no more than 5-10 minutes to complete. Your comments will be very useful so that we can start designing the webinars. The survey will be open until 26 March 2023.

THE SURVEY IS OPEN TO ALL AND AVAILABLE IN ENGLISH, GERMAN, FRENCH, ITALIAN AND SPANISH. Share it with other affected families, family members and friends who may be interested in learning more about Ionis and upcoming clinical trials.

You can find the survey here: https://forms.office.com/Pages/ResponsePage.aspx?id=hq_44ZXuGEe9DTdbNzZsg3nLPaw2nYVHh0pzG16xwXpUOU9HQ1dTRjFLOEpTR0JWVDdRRkNGQzlYUS4u

Thank you for your time. Please don't hesitate to contact us if you have any questions.