Damian Eade, Managing Director, Cello Health Logic; Isaac Batley, Chairman, Cello Health Communications
Presented by Cello Health, now part of Lumanity
We explored the challenges of living with a rare disease and highlighted synergies across rare disease communities, as well as the implications for pharma.
Top five themes in the rare disease patient community based on social media listening analysis
- Fight for validation
Having to educate HCPS on their condition and having to become an expert in order to feel validated and respected - Advocate and patient
Being both an advocate and a patient Patient advocacy is at the top of the disease burden. Patients can feel forced to become advocates because they feel if they
don’t, no one else will fight for them and their community - No one else understands
Low disease awareness leads to more social isolation - Financial stress
On a global scale, families and patient are taking to social media to raise funds for treatment - Feeling like a novelty
Feeling like a ‘lab rat’, a teaching lesson, or an interesting case, which can feel dehumanizing
