Канал: RareBeacon

Patient Group Involvement in Clinical Trials

Patient Group Involvement in Clinical Trials

Health Utilities and How to Measure Them

Health Utilities and How to Measure Them

Supporting Mental Health animation

Supporting Mental Health animation

Webinar: Boost your patient group's productivity using AI

Webinar: Boost your patient group's productivity using AI

The London Rare Disease Showcase 2023

The London Rare Disease Showcase 2023

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

#RareShowcase23: Kirsty Hoyle, Thoughts into Action

#RareShowcase23: Kirsty Hoyle, Thoughts into Action

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

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

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

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

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

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

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

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

Webinar: Managing expectations of advanced therapies

Webinar: Managing expectations of advanced therapies

Webinar: Market access and patient delivery in advanced therapies

Webinar: Market access and patient delivery in advanced therapies

Success stories of advanced therapies

Success stories of advanced therapies

Webinar: What are advanced therapies?

Webinar: What are advanced therapies?

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

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

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

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

Review of The Cambridge Rare Disease Showcase 2022

Review of The Cambridge Rare Disease Showcase 2022

Rareminds: Findings and Observations from our first 18 months

Rareminds: Findings and Observations from our first 18 months

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

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

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

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

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

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

The VRDS- Genomics 101

The VRDS- Genomics 101

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

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

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

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

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

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

Creatively capturing the rare disease patient voice

Creatively capturing the rare disease patient voice

The VRDS- Access challenges: the rare disease patient experience

The VRDS- Access challenges: the rare disease patient experience

Real world evidence generation strategies for rare diseases

Real world evidence generation strategies for rare diseases

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

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

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

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

Rare 2030: Foresight in Rare Disease Policy

Rare 2030: Foresight in Rare Disease Policy

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

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

Patient advocacy: a collaborative approach

Patient advocacy: a collaborative approach

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

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

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

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

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

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

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

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

#BeatTheBell at The International Rare Disease Showcase

#BeatTheBell at The International Rare Disease Showcase

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

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

Back to basics: what is drug repurposing and why should we care?

Back to basics: what is drug repurposing and why should we care?

Drug repurposing in action (Part I)

Drug repurposing in action (Part I)

A 19 year journey: the AKU story

A 19 year journey: the AKU story

How is rare disease policy developing around the world?

How is rare disease policy developing around the world?

Building the rare communities of Africa

Building the rare communities of Africa

Harnessing the power of data technology to drive diagnoses and rare understanding

Harnessing the power of data technology to drive diagnoses and rare understanding

A look at rare diseases across the Americas

A look at rare diseases across the Americas

Advancing rare diseases in the Asia-Pacific region

Advancing rare diseases in the Asia-Pacific region

Does location matter: experiences of diagnosis, access and care

Does location matter: experiences of diagnosis, access and care

Beyond borders: empowering an inclusive and international community

Beyond borders: empowering an inclusive and international community

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

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

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

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

Attend the Cambridge Rare Disease showcase!

Attend the Cambridge Rare Disease showcase!

Webinar | How to successfully recruit and manage volunteers

Webinar | How to successfully recruit and manage volunteers

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

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

WHEN THE LOTUS BLOOMS | A Documentary of Acute Survival

WHEN THE LOTUS BLOOMS | A Documentary of Acute Survival

Reforming Rare Diseases: Making the Rare Path the Right One

Reforming Rare Diseases: Making the Rare Path the Right One

Becoming Beacon

Becoming Beacon

Access and HTA challenges: a HPP case study with key learnings

Access and HTA challenges: a HPP case study with key learnings

Rarely Heard: A rare disease podcast sharing stories that matter

Rarely Heard: A rare disease podcast sharing stories that matter

The International Rare Disease Showcase: see what's in store

The International Rare Disease Showcase: see what's in store

Findacure is becoming...

Findacure is becoming...

Webinar: Maximising engagement with HCPs

Webinar: Maximising engagement with HCPs

Drug Repurposing for Rare Diseases 2021- Timothy Dreyer

Drug Repurposing for Rare Diseases 2021- Timothy Dreyer

Drug Repurposing for Rare Diseases 2021- Sophie Liddell

Drug Repurposing for Rare Diseases 2021- Sophie Liddell

Webinar: Measuring Quality of Life

Webinar: Measuring Quality of Life

Webinar: Navigating Health Technology Assessments

Webinar: Navigating Health Technology Assessments

Happy Patient Advocacy Day!

Happy Patient Advocacy Day!

Webinar: Understanding health economics: preparing your patient group for HTA

Webinar: Understanding health economics: preparing your patient group for HTA

The Student Voice Prize 2020

The Student Voice Prize 2020

Welcome to Drug Repurposing for Rare Diseases Conference 2021!

Welcome to Drug Repurposing for Rare Diseases Conference 2021!

Webinar: Ensuring inclusive communications around genetics

Webinar: Ensuring inclusive communications around genetics

Webinar: Natural history studies for rare diseases

Webinar: Natural history studies for rare diseases

001 | How to make the most of digital networking

001 | How to make the most of digital networking

How to make the most of digital networking

How to make the most of digital networking

How to donate clothes on Thrift+

How to donate clothes on Thrift+

Meet 2019 Student Voice Prize runner-up, Muhammad Shaikh

Meet 2019 Student Voice Prize runner-up, Muhammad Shaikh

Anneliese Why Enter The Student Voice Prize

Anneliese Why Enter The Student Voice Prize

Building patient data to drive research

Building patient data to drive research

What does Early Access actually mean?

What does Early Access actually mean?

The National Lottery funding: opportunities for rare disease organisations during Covid-19

The National Lottery funding: opportunities for rare disease organisations during Covid-19

Robyn Silverton and her life with PK deficiency

Robyn Silverton and her life with PK deficiency

Setting yourself up for fundraising success - Laura Thompson-Harper

Setting yourself up for fundraising success - Laura Thompson-Harper

Setting yourself up for fundraising success - Rick Thompson (session one)

Setting yourself up for fundraising success - Rick Thompson (session one)

Setting yourself up for fundraising success - Rick Thompson (session three)

Setting yourself up for fundraising success - Rick Thompson (session three)

Setting yourself up for fundraising success - Shirlene Badger

Setting yourself up for fundraising success - Shirlene Badger

Recruiting and managing trustees

Recruiting and managing trustees

Evaluating the impact of Drug Repurposing in rare diseases and covid-19 webinar

Evaluating the impact of Drug Repurposing in rare diseases and covid-19 webinar

How Has Findacure Helped Your Patient Group?

How Has Findacure Helped Your Patient Group?

Drug Repurposing for Rare Diseases 2020 - Lisa Dilworth

Drug Repurposing for Rare Diseases 2020 - Lisa Dilworth

Drug Repurposing for Rare Diseases 2020 - David Cavalla

Drug Repurposing for Rare Diseases 2020 - David Cavalla

Drug Repurposing for Rare Diseases 2020 - Rick Thompson

Drug Repurposing for Rare Diseases 2020 - Rick Thompson

Drug Repurposing for Rare Diseases 2020 - Karen James

Drug Repurposing for Rare Diseases 2020 - Karen James

Drug Repurposing for Rare Diseases 2020 - Paul Wicks

Drug Repurposing for Rare Diseases 2020 - Paul Wicks

Drug Repurposing for Rare Diseases 2020 - Sandy Ayoub

Drug Repurposing for Rare Diseases 2020 - Sandy Ayoub

Drug Repurposing for Rare Diseases 2020 - Kelly Vance

Drug Repurposing for Rare Diseases 2020 - Kelly Vance

Drug Repurposing for Rare Diseases 2020 - Barbara Goodman

Drug Repurposing for Rare Diseases 2020 - Barbara Goodman

Drug Repurposing for Rare Diseases 2020 - Dr Alex Bullock

Drug Repurposing for Rare Diseases 2020 - Dr Alex Bullock

The Findacure patient group mentoring programme

The Findacure patient group mentoring programme

'Leading a rare patient group'- Lucy McKay

'Leading a rare patient group'- Lucy McKay

'Leading a rare patient group' workshop- Sue Routledge

'Leading a rare patient group' workshop- Sue Routledge

'Leading a rare patient group' workshop- Jared Griffin

'Leading a rare patient group' workshop- Jared Griffin

'Leading a rare patient group' workshop- Becky Hardiman

'Leading a rare patient group' workshop- Becky Hardiman

Building an international patient registry webinar- with Pulse Infoframe

Building an international patient registry webinar- with Pulse Infoframe

'Drug repurposing as a strategy for rare disease charities'- Rick Thompson

'Drug repurposing as a strategy for rare disease charities'- Rick Thompson

The Manchester Rare Disease Showcase - Asya Choudry

The Manchester Rare Disease Showcase - Asya Choudry

The Manchester Rare Disease Showcase - Adrian Woolf

The Manchester Rare Disease Showcase - Adrian Woolf

The Manchester Rare Disease Showcase - Mike Cain

The Manchester Rare Disease Showcase - Mike Cain

The Manchester Rare Disease Showcase - Sondra Butterworth

The Manchester Rare Disease Showcase - Sondra Butterworth

The DMD Registry - Neil Bennett, Action Duchenne

The DMD Registry - Neil Bennett, Action Duchenne

The Manchester Rare Disease Showcase - Jackie Imrie

The Manchester Rare Disease Showcase - Jackie Imrie

The Manchester Rare Disease Showcase - Stephanie Yau

The Manchester Rare Disease Showcase - Stephanie Yau

The Manchester Rare Disease Showcase - Sally Hatton

The Manchester Rare Disease Showcase - Sally Hatton

The Manchester Rare Disease Showcase - Liz Blows

The Manchester Rare Disease Showcase - Liz Blows

The Manchester Rare Disease Showcase - Naomi Litchfield and Graham Sidorowicz

The Manchester Rare Disease Showcase - Naomi Litchfield and Graham Sidorowicz

The Manchester Rare Disease Showcase - Rachel Jones

The Manchester Rare Disease Showcase - Rachel Jones

Con Hennessy Interview

Con Hennessy Interview

Building a rare disease patient registry--Neil Bennett

Building a rare disease patient registry--Neil Bennett

Building a rare disease patient registry--Sally Jeans

Building a rare disease patient registry--Sally Jeans

Introduction to 'Supporting nutritional management'

Introduction to 'Supporting nutritional management'

How to search PubMed

How to search PubMed

Peer mentoring 2019 - Maria Walters

Peer mentoring 2019 - Maria Walters

Growing your patient community: identifying patients and groups online

Growing your patient community: identifying patients and groups online

Contact: how we help rare disease patients and families - Rachel Gibson

Contact: how we help rare disease patients and families - Rachel Gibson

Drug Repurposing for Rare Diseases 2019 - Dr Pan Pantziarka

Drug Repurposing for Rare Diseases 2019 - Dr Pan Pantziarka

Drug Repurposing for Rare Diseases Conference 2019 - Catherine Lawrence & Janet Bloor

Drug Repurposing for Rare Diseases Conference 2019 - Catherine Lawrence & Janet Bloor

Drug Repurposing for Rare Diseases Conference 2019 - Logan Williams

Drug Repurposing for Rare Diseases Conference 2019 - Logan Williams

Drug Repurposing for Rare Diseases Conference 2019 - Rachael Stevenson & Becky Jenner

Drug Repurposing for Rare Diseases Conference 2019 - Rachael Stevenson & Becky Jenner

Drug Repurposing for Rare Diseases Conference 2019 - Suzanne Morris

Drug Repurposing for Rare Diseases Conference 2019 - Suzanne Morris

Drug Repurposing for Rare Diseases Conference 2019 - Rick Thompson

Drug Repurposing for Rare Diseases Conference 2019 - Rick Thompson

Transforming Rare Science into Treatments - Dr Chris Kingswood

Transforming Rare Science into Treatments - Dr Chris Kingswood

Transforming Rare Science into Treatments - Dr Lakshminarayan Ranganath

Transforming Rare Science into Treatments - Dr Lakshminarayan Ranganath

Transforming Rare Science into Treatments - Dr Catriona Crombie

Transforming Rare Science into Treatments - Dr Catriona Crombie

The Glasgow Rare Disease Showcase - Rebecca Stewart

The Glasgow Rare Disease Showcase - Rebecca Stewart

The Glasgow Rare Disease Showcase - Catherine Lawrence

The Glasgow Rare Disease Showcase - Catherine Lawrence

The Glasgow Rare Disease Showcase - Morven-May MacCallum

The Glasgow Rare Disease Showcase - Morven-May MacCallum

The Glasgow Rare Disease Showcase - Tracy Milne

The Glasgow Rare Disease Showcase - Tracy Milne

The Glasgow Rare Disease Showcase - Rachael Brooker

The Glasgow Rare Disease Showcase - Rachael Brooker

The Glasgow Rare Disease Showcase - Wendy Inglis Humphrey

The Glasgow Rare Disease Showcase - Wendy Inglis Humphrey

The Glasgow Rare Disease Showcase - Stacey McPherson

The Glasgow Rare Disease Showcase - Stacey McPherson

The Glasgow Rare Disease Showcase - Patricia Osborne

The Glasgow Rare Disease Showcase - Patricia Osborne

The Glasgow Rare Disease Showcase - Dr Martina Rodie

The Glasgow Rare Disease Showcase - Dr Martina Rodie

The Cambridge Rare Disease Showcase 2018 - Annabel Griffiths

The Cambridge Rare Disease Showcase 2018 - Annabel Griffiths

The Cambridge Rare Disease Showcase 2018 - Robert Whitemore

The Cambridge Rare Disease Showcase 2018 - Robert Whitemore

The Cambridge Rare Disease Showcase 2018 - Hilary Longhurst

The Cambridge Rare Disease Showcase 2018 - Hilary Longhurst

The Cambridge Rare Disease Showcase 2018 - Dr Ramesh Bulusu

The Cambridge Rare Disease Showcase 2018 - Dr Ramesh Bulusu

Fundraising for rare disease patient groups - Beth Upton

Fundraising for rare disease patient groups - Beth Upton

Fundraising for rare disease patient groups - Rick Thompson

Fundraising for rare disease patient groups - Rick Thompson

Developing Online Communications - Susan Passmore

Developing Online Communications - Susan Passmore

Developing Online Communications - Libbie Read

Developing Online Communications - Libbie Read

Developing Online Communications - Nicola Miller

Developing Online Communications - Nicola Miller

Drug Repurposing Conference 2018 - Tracy Lynch

Drug Repurposing Conference 2018 - Tracy Lynch

Drug Repurposing Conference 2018 - Barbara Asboth

Drug Repurposing Conference 2018 - Barbara Asboth

Drug Repurposing Conference 2018 - Jens Harald Kongsoe

Drug Repurposing Conference 2018 - Jens Harald Kongsoe

Drug Repurposing Conference 2018 - Richard Hampson

Drug Repurposing Conference 2018 - Richard Hampson

Drug Repurposing Conference 2018 - Lucy Mckay

Drug Repurposing Conference 2018 - Lucy Mckay

Drug Repurposing Conference 2018 - Rod Hall

Drug Repurposing Conference 2018 - Rod Hall

Drug Repurposing Conference 2018 - Prof. Michael Briggs

Drug Repurposing Conference 2018 - Prof. Michael Briggs

Drug Repurposing Conference - Dr Rick Thompson

Drug Repurposing Conference - Dr Rick Thompson

The Newcastle Rare Disease Showcase - Richard Leach

The Newcastle Rare Disease Showcase - Richard Leach

Access to Medicines - Nick Meade

Access to Medicines - Nick Meade

Access to Medicines - Josie Godfrey

Access to Medicines - Josie Godfrey

Access to Medicines - Vanessa Christie-Brown

Access to Medicines - Vanessa Christie-Brown

Access to Medicines - Lindsay Weaver

Access to Medicines - Lindsay Weaver

Introduction to Health Economics

Introduction to Health Economics

The Newcastle Rare Disease Showcase - Kerry Leeson-Beevers

The Newcastle Rare Disease Showcase - Kerry Leeson-Beevers

The Newcastle Rare Disease Showcase - Brian Cullen

The Newcastle Rare Disease Showcase - Brian Cullen

The Newcastle Rare Disease Showcase - Charlotte Proud

The Newcastle Rare Disease Showcase - Charlotte Proud

The Newcastle Rare Disease Showcase - Nigel Nicholls

The Newcastle Rare Disease Showcase - Nigel Nicholls

The Newcastle Rare Disease Showcase - Dr Rick Thompson

The Newcastle Rare Disease Showcase - Dr Rick Thompson

The Newcastle Rare Disease Showcase - Victoria Hedley

The Newcastle Rare Disease Showcase - Victoria Hedley

The Newcastle Rare Disease Showcase - Prof. Mike Briggs

The Newcastle Rare Disease Showcase - Prof. Mike Briggs

The Newcastle Rare Disease Showcase - Rebecca Leary

The Newcastle Rare Disease Showcase - Rebecca Leary

The Newcastle Rare Disease Showcase - Nicola Miller

The Newcastle Rare Disease Showcase - Nicola Miller

The Newcastle Rare Disease Showcase - Beryl Park

The Newcastle Rare Disease Showcase - Beryl Park

Working with Industry Workshop - Julie Vallortigara

Working with Industry Workshop - Julie Vallortigara

Working with Industry Workshop - Rebecca Starkie

Working with Industry Workshop - Rebecca Starkie

Working with Industry Workshop - Jill Prawer

Working with Industry Workshop - Jill Prawer

The Cambridge Rare Disease Showcase - Dr Jagtar Nijjar

The Cambridge Rare Disease Showcase - Dr Jagtar Nijjar

The Cambridge Rare Disease Showcase - David Rose

The Cambridge Rare Disease Showcase - David Rose

The Cambridge Rare Disease Showcase - Francesca Wicks

The Cambridge Rare Disease Showcase - Francesca Wicks

The Cambridge Rare Disease Showcase - Richard Leach

The Cambridge Rare Disease Showcase - Richard Leach

The Cambridge Rare Disease Showcase - Janet Bloor and Shelley Simmonds

The Cambridge Rare Disease Showcase - Janet Bloor and Shelley Simmonds

'Developing Medical Guidelines Explained' Webinar

'Developing Medical Guidelines Explained' Webinar

Intro to Health Technology Assessments

Intro to Health Technology Assessments

Intro to Patient Registries

Intro to Patient Registries

A-Z To Setting Up a Patient Group Workshop - Andrew O'Brien

A-Z To Setting Up a Patient Group Workshop - Andrew O'Brien

A-Z To Setting Up a Patient Group Workshop - Uday Thakkar

A-Z To Setting Up a Patient Group Workshop - Uday Thakkar