Strategizing rare disease awareness & education globally

Written on Friday 26th November 2021

We live in a time of global challenges ­– climate change, COVID, and poverty. We need global solutions to these problems, and we are seeing some evidence that such solutions may be possible. The challenges associated with rare diseases are no different and given that over 300 million people live with a rare condition globally, lack of an accurate diagnosis and poor treatment access have a significant impact on individuals and their families.

Amplifying disease awareness can positively impact understanding, research, and support — so how can we increase this impact in a world of information overload?

A lot of great grassroot activities and country-led campaigns are in place, but how can we unite so we can better amplify voices on a global stage? How can we reach healthcare professionals who require different levels of education and understanding to better support people living with rare diseases? Finally, how can we ensure that the rare disease community, including the pharmaceutical industry, can join forces on awareness campaigns and deliver impactful solutions?

This webinar explores the importance of sharing learnings and ideas globally to create a meaningful impact that connects and mobilizes communities.


Odette Schwegler, Co-Founder, Tin Soldiers

Amanda Cali, Co-Founder, Tin Soldiers

Sue Wood, Vice President Global Medical Affairs, Kyowa Kirin

Gavin Jones, Global Advisor Rare Disease, OPEN Health

Andy Bell, Global Creative Strategy Director, OPEN Health