02:06

What is the value of patient groups?

02:18

What is Beacon for Rare Diseases?

02:21

Patient Group Involvement in Clinical Trials

02:46

Health Utilities and How to Measure Them

02:48

Supporting Mental Health animation

01:13:38

Webinar: Boost your patient group's productivity using AI

02:55

The London Rare Disease Showcase 2023

16:13

#RareShowcase23 David Rose - Lived experiences of being a GOSH patient and volunteer

05:31

#RareShowcase23 Lightning Talk Michelle Conway and Lorna Pender - Navigating early access programs

05:38

#RareShowcase23 Lightning Talk Lara Bloom - How project ECHO can help rare diseases

04:46

#RareShowcase23 Lightning Talk Esme Down - A medical student with rare diseases

05:08

#RareShowcase23 Lightning Talk Allison Watson - UKRET: the power of collaboration in rare disease

05:15

#RareShowcase23 Lightning Talk Dr Will Evans - Stratifying patients for rare disease identification

05:43

#RareShowcase23 Lightning Talk Loren Cameron - Inequality and diversity in clinical research

17:05

#RareShowcase23 Melita Irving, Guy's and St Thomas' - Trials and tribulations in rare diseases

19:00

#RareShowcase23 Richard Evans - MRC-NIHR rare diseases research platform and MRC funding

14:30

#RareShowcase23 Addassa Follett - Empowering lives: the Sickle Cell Society's Impact

10:34

#RareShowcase23 Catriona Crombie - Challenges to translating rare disease research into impact

18:56

#RareShowcase23 Prof. Heinz Jungbluth - Rare disease research: the Paediatric Neurology perspective

14:57

#RareShowcase23 Nick Meade, Genetic Alliance UK - The future of rare advocacy in UK Parliaments

04:57

#RareShowcase23: Kirsty Hoyle, Thoughts into Action

04:42

#RareShowcase23: Mel Dixon, Navigating our way through the labyrinth of a newly discovered disease

05:03

#RareShowcase23: Thiloka Ratnaike, Mitochondrial diseases: can we improve diagnosis for patients?

06:35

#RareShowcase23: Fiona Nielsen, Challenges of drug discovery for rare developmental diseases

05:43

#RareShowcase23: Paul Wicks, Lessons learned from the other side of the desk in genetic testing

01:27:48

Webinar: Managing expectations of advanced therapies

01:29:26

Webinar: Market access and patient delivery in advanced therapies

01:31:28

Success stories of advanced therapies

01:26:07

Webinar: What are advanced therapies?

45:15

Navigating the cost of living crisis as a patient group: Building resilience

01:18:17

Webinar: Navigating the Cost of Living Crisis, understanding the funding landscape

11:48

Review of The Cambridge Rare Disease Showcase 2022

05:40

Rareminds: Findings and Observations from our first 18 months

13:48

CRDS22 Headline talk: Improving transition from paediatric to adult care for young people

06:31

CRDS22 LT: Meeting the unmet need for rare Salivary Gland Cancers in the UK and beyond

01:27:57

Webinar three: How to choose the next you - where to start with succession planning

32:35

The VRDS- Genomics 101

39:19

The VRDS- 'Clinical trials post Covid-19: how do we respond?'

34:40

The VRDS- 'The value of patient input in creating digital endpoints'

52:31

The VRDS: Harnessing the voice of youth in rare disease adovacy

30:58

Creatively capturing the rare disease patient voice

41:55

The VRDS- Access challenges: the rare disease patient experience

13:11

Real world evidence generation strategies for rare diseases

36:28

Drug Repurposing for Rare Diseases 2021 | Pitch 'n' mix lightning talks

33:47

Why quality data is a driver helping you bring a repurposed drug to market quicker

32:28

Rare 2030: Foresight in Rare Disease Policy

14:56

Patient advocacy: a collaborative approach

10:20

All the tricks of the trade: multi-method research for rare diseases

40:37

Navigating the medicines repurposing maze: experiences and tips for the journey to the clinic

30:24

What are the 5 key ingredients to a rare disease registry?

49:20

Funding research in low and lower-middle income countries: challenges and considerations

22:38

Building an international patient group: achieving a global reach with limited resources

45:20

#BeatTheBell at The International Rare Disease Showcase

01:56:23

The road to treatment: collaboration and innovation riving new rare therapies

01:58:29

Beyond borders: empowering an inclusive and international community

01:25:51

Webinar two: Employing staff to drive your patient group towards its goals

00:32

Hear why you should attend the Cambridge Rare Disease Showcase in 30 seconds!

01:37

Attend the Cambridge Rare Disease showcase!

01:47:00

Webinar | How to successfully recruit and manage volunteers

01:33:52

Webinar | Creating a presence: increasing the visibility of your patient group