In this webinar, Eurordis will explore the key findings from the latest Rare Barometer report on
the opinion of people living with rare diseases on future policies that may impact their lives.
They will also discuss how you can use the results of the survey in your advocacy.
Sandra Courbier and Jessie Dubief from the Rare Barometer Team will present the survey,
and together with Jenny Steele and Anna Kole they will answer any questions and inform
you how the survey results can support you in the #30millionreasons campaign to help
advocate for a European action plan on rare diseases!
Webinar speakers are:
– Sandra Courbier, Social Research Director
– Jessie Dubief, Rare Barometer Research Executive
– Anna Kole, Public Health Policy Director – Rare2030 Project Lead
– Jenny Steel, Campaign Manager
The webinar will include a Q&A for you to ask your questions.
While we will not gather together this year in person, we have developed an interesting, novel, and innovative program that will be brought to you anywhere you are located. We will once again provide a highly engaging and interactive virtual online meeting using the Intrado platform.
HSG 2021: UNMAKSING HD will provide many of the same experiences you are used to:
- INTERACTIVE SESSIONS – plenary presentations, panel discussions, with live Q&A sessions sharing the latest in research and treatments.
- An exciting virtual FAMILY DAY SYMPOSIUM for HD families to hear from HD experts and community advocates.
- BREAKOUT SESSIONS and WORKING GROUPS.
- Virtual NETWORKING LOUNGE to meet up with, engage and collaborate with colleagues, friends, and experts.
- A virtual EXHIBIT HALL to engage with representatives from industry and advocacy.
- An interactive POSTER PAVILION to browse accepted research abstract posters, and engage with poster presenters during scheduled times.