Bolstering Rare Disease Research through Collaboration┃Jo Balfour
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Bolstering Rare Disease Research through Collaboration┃Jo Balfour
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Join us for this special Rare Disease Day episode of Not Just Patients, where we speak with Jo Balfour, Managing Director and Co-founder of Cambridge Rare Disease Network (CamRARE), about research in rare disease.
Jo is the driving force behind the CamRare's innovative events program, designed to raise awareness about rare diseases and encourage cross-sector collaboration. She manages the organisation's Companies Forum, a networking and knowledge-sharing platform for pharma, biotech, and life science companies, and oversees all other aspects of the charity's research and project work. Additionally, Jo founded the charity's regional rare disease community, Unique Feet, bringing families together in an inclusive and supportive environment.
Listen to this insightful conversation where we discuss the unique challenges faced by people living with rare disease, overcoming barriers to rare disease research, and the value of collaboration between researchers and rare disease patient organisations.
Chapters
0:00 - Introductions
1:30 - Jo's journey into rare disease advocacy
7:07 - Challenges of living with a rare disease
11:34 - Challenges to rare disease research
15:58 - The numbers game and need for data
21:29 - Collaborating with patient organisations
28:10 - Navigating the rare disease advocacy landscape
40:12 - Initiatives supporting collaborative research
47:47 - Jo's dream for rare disease research
50:53 - Advice for researchers
51:14 - Advice for patient communities
53:50 - Reflections with Caitlin and Clarinda
Resources and abbreviations mentioned:
- UK Rare Diseases Framework
- CoRDS - Coordination of rare diseases at Stanford
- Duchenne UK
- PROMs - patient-reported outcome measures
- Rare Diseases International
- Global Genes
- EURORDIS
- Genetic Alliance UK
- Cystic Fibrosis Trust
- Cambridge Rare Disease Network (CamRARE)
- Department for Health and Social Care Disease Research Landscape Report
- RING 20
- Rare Disease Research Network
- Cambridge Rare Summit
- MRC - Medical Research Council, UK
- NIHR - National Institute for Health and Care Research, UK
- LifeArc
- Additional suggested: The Power of Being Counted
Have feedback or suggestions for us? We'd love to hear from you!
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