About FibroFlutters & ZebraStrutters
Speaking at the Orphan Drugs & Rare Diseases Global Congress 2022 Europe: 17th – 18th February 2022, London UK
Opening Keynote Panel Discussion: Patient and Caregivers perspective: Transforming Lives through innovations
Thursday, February 17, 2022 9:00 AM to 9:45 AM
Panelists:
- Moderator > Josie Godfrey, Co-Founder and CEO, Realise Advocacy
- Carole Scrafton, CEO & Co-Founder, FibroFlutters / ZebraStrutters
- Sheela Upadhyaya, Rare Diseases & RAPID-C19 Strategic Advisor, NICE
- Angela Columbano, Head Business Development & Partnership, Genethon
- Rhian Kiely, RWE Commercial Director, Europe, Open Health Evidence & Access
ROUNDTABLE DISCUSSIONS
Friday, February 18, 2022 2:10 PM to 2:45 PM
ROUNDTABLE 2 – Value of partnering with advocacy organizations to create innovative patient-driven solutions
Moderated by:Â
- Carole Scrafton, CEO & Co-Founder, FibroFlutters
- David Ross, Patient Advocate, Rare Disease Mental Health
- Paul Lim, Associate Director, Patient Advocacy, Blueprint Medicines
Opening Keynote Panel Discussion: Patient and Caregivers perspective: Transforming Lives through innovations
Carole Scrafton, CEO & Co-Founder, FibroFlutters / ZebraStrutters with friend, colleague and peer David Ross from Rare Males Mental Health Group
Attending online events:
- Rare Disease in Newcastle: Progress and Future Priorities
- Rare Disease Day at NIH
Sharing varying RDD campaigns across our channels
Contributing my voice to an article by Prime Global for their RDD campaign
Rare reflections: has the pandemic helped or hindered patient engagement and research for rare diseases?
Prime Global 28 February, 2022
Emma Sutcliffe, SVP Patient Insights and Solutions, Prime Patient shares her reflections about whether the pandemic has helped or hindered patient engagement and research for rare diseases.