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.Chapters0:00 - Introductions1:30 - Jo's journey into rare disease advocacy7:07 - Challenges of living with a rare disease11:34 - Challenges to rare disease research15:58 - The numbers game and need for data21:29 - Collaborating with patient organisations28:10 - Navigating the rare disease advocacy landscape40:12 - Initiatives supporting collaborative research47:47 - Jo's dream for rare disease research50:53 - Advice for researchers51:14 - Advice for patient communities53:50 - Reflections with Caitlin and ClarindaResources and abbreviations mentioned:UK Rare Diseases FrameworkCoRDS - Coordination of rare diseases at StanfordDuchenne UKPROMs - patient-reported outcome measures Rare Diseases InternationalGlobal GenesEURORDISGenetic Alliance UK Cystic Fibrosis TrustCambridge Rare Disease Network (CamRARE)Department for Health and Social Care Disease Research Landscape ReportRING 20Rare Disease Research NetworkCambridge Rare SummitMRC - Medical Research Council, UKNIHR - National Institute for Health and Care Research, UKLifeArcAdditional suggested: The Power of Being CountedHave feedback or suggestions for us? We'd love to hear from you!Website: notjustpatients.comLinkedIn: Not Just PatientsEmail: [email protected]

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