In the run up to Rare Disease Day 2023 on 31 January at 5.30 CET, 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.
Lucy McKay kicked off the evening with a fascinating discussion on how to equip medical students and professionals with knowledge and tools to improve the rare patient experience. A UK trained doctor and having a brother who died from a rare disease, McKay shared both her professional and personal expertise on the importance of basic rare disease education being available to every doctor so they can cater for all of their patients.
Dorica Dan, Chair of the Romanian National Alliance and Member of EURORDIS Board joined us next, and offered an in-depth discussion on how to involve clinicians and nurses in the setting up of rare disease structures at national level, but also in rural areas, with an example of progress in Romania.
Paediatrician medical geneticist turned rare disease advocate and expert Professor Annick Rotschild, Director of the Institute of Rare Diseases at the Edmond and Lily Safra Children’s Hospital in Israel, spoke next. Prof Rotschild noted the need for Rare Disease Expert Centres to share information on rare diseases and empower parents who are the real experts on rare diseases. Constructive communication between patients and healthcare providers is also necessary.
Kelly Du Plessis, founder and CEO of Rare Diseases South Africa, next offered an illuminating step-by-step Theory of Change approach to rare disease advocacy, noting current challenges that are present In South Africa where the vast majority of healthcare lies in the private sector. De Plessis gave a convincing strategy that provided outcomes arising from using such an approach.
Finally, Louise Fish, CEO of Genetic Alliance UK, ended the webinar with an interesting discussion on care coordination in the UK, Genetic Alliance UK’s social media strategy and two case studies carried out by Genetic Alliance UK on specialist rare disease centres.
The evening concluded with an enlightening Q & A between the audience and panellists.
Watch the webinar here.
Catch up on our previous webinars:
- How to use the Download Materials on the Rare Disease Day website
- Preparing your social media communication 2 weeks ahead of Rare Disease Day
- How to use Rare Disease Day to advance your advocacy objectives
- How to prepare your digital communication for Rare Disease Day
- Illumination of public and emblematic buildings for Rare Disease Day
- How to effectively approach media to boost your Rare Disease Day campaign