Rare Disease Day Webinar Series Returns for 2022

We are thrilled to announce the return of the Rare Disease Day capacity-building webinar series, following last year’s huge success. In this year’s webinar series, we cover a range of topics to help you prepare for Rare Disease Day 2022, available to you with subtitles in 6 languages! By listening to the experts and connecting with others in the community, this series will help you to be better equipped to raise awareness for people living with a rare disease in the run up to Rare Disease Day 2022.

Webinar: How to use Rare Disease Day to advance your advocacy objectives?

We had the joy of welcoming expert speaker Jess Walsh, a Hill & Knowlton Strategies consultant with decades of experience in healthcare advocacy. Jess shared insightful tips and tricks for leveraging awareness days to advance local or national advocacy agendas.

Next, we heard from Anna Kole, the Public Health Policy Director at EURORDIS who leads the campaign for a European Action Plan for Rare Diseases. Anna shared her experience of using Rare Disease Day to increase the visibility of her campaign and advocate for policy on the European level.

We then heard from Amira Awada, a lawyer and Director Vice President of Instituto Vidas Raras, a Brazilian patient organization. Amira described how Instituto Vidas Raras successfully campaigned for a newborn screening bill in Brazil. This campaign focused on the power of community-driven action, underlining the importance of social media influencers as well as policymakers.

Finally, we heard from Kristen Angel, Associate Director of Advocacy at the National Organization for Rare Disorders in the USA. Kristen shared with us the inspirational stories of several volunteers across the USA, demonstrating the power of a single person to generate change.

Watch the live recording of the Webinar here, subtitled in Arabic, Chinese, French, Spanish and Russian.