We hosted a webinar with guest speakers and medical experts from around the world to help shed a light on raising awareness among healthcare providers. Among our medical experts, we were joined by Lucy McKay, CEO of MEDICS4RARE and Professor Annick Rotschild, Director of the Institute of Rare Diseases at the Edmond and Lily Safra Children’s Hospital in Israel. Among our guest speakers from our National Alliance Partners were Dorica Dan, Chair of the Romanian National Alliance and Member of EURORDIS Board; Kelly Du Plessis, founder and CEO of Rare Diseases South Africa; and finally, Louise Fish, CEO of Genetic Alliance UK.
This webinar kickstared the countdown to #RareDiseaseDay on February 28 2023 and will provide you with all the resources you need to raise awareness for the diverse community of over 300 million people living with a rare disease and engage and educate young people on the subject.
In the run up to Rare Disease Day 2022, we gathered a team of expert speakers from all around the world to tackle an important question: How should we talk to young children about rare diseases? Irina Ban, Yukiko Nishimura, Marta Jacinto, and Samuel Agyei Wiafe shared their experiences of talking to young children about rare diseases and their efforts to implement projects in local schools that engage and educate young people on the subject.
To kickstart the countdown to Rare Disease Day 2022, we had the joy of welcoming Jess Walsh that shared tips about how you can leverage awareness days to advance your local or national advocacy agenda. We also heard from Anna Kole, Amira Awada and Kristen Angel on their experience in used Rare Disease Day as a spring board to build their advocacy campaign, increasing attention from the local or national policy makers.
This webinar outlined the importance of traditional media and will help you to better understand what journalists need to run your story for Rare Disease Day. Media coverage can help develop your communication and raise awareness of your Rare Disease Day events. The workshop includes case studies from three of our National rare disease patient organisation partners, India, Argentina and Croatia.
Watch the recording of this webinar to see which buildings were lit up for Rare Disease Day 2020 and to gain valuable tips from those who were responsible, to help you light up a building for Rare Disease Day in your area!