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Programme

What’s in store at #DrugRepo21

We pride ourselves on producing a diverse programme that delivers something for everyone, and ensures our audience has every opportunity to consider drug repurposing from different perspectives.

With talks from industry, academia, patient groups, and of course, rare disease patients themselves, Drug Repurposing for Rare Diseases welcomes everyone with a place in the rare disease community.

Alongside traditional presentations, this year’s virtual conference will see a series of interactive workshops, breakout sessions and built-in networking opportunities to facilitate conversation and hands-on engagement; ensuring everyone leaves #DrugRepo21 with the knowledge and connections they need to deliver the treatments patients desperately need. 

We pride ourselves on producing a diverse programme that delivers something for everyone, and ensures our audience has every opportunity to consider drug repurposing from different perspectives.

With talks from industry, academia, patient groups, and of course, rare disease patients themselves, Drug Repurposing for Rare Diseases welcomes everyone with a place in the rare disease community.

Alongside traditional presentations, this year’s virtual conference will see a series of interactive workshops, breakout sessions and built-in networking opportunities to facilitate conversation and hands-on engagement; ensuring everyone leaves #DrugRepo21 with the knowledge and connections they need to deliver the treatments patients desperately need. 

Will you join the conversation? 

Programme

Tuesday 15th June 2021

10:00 – 12:00 BST, Virtual main stage

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

Why should anyone in the world of rare diseases care about repurposing? With innovative advanced therapies that can actively supplement or modify the genome on the horizon, surely the use of old drugs will quickly be left in the past?

In this session Findacure’s CEO and resident repurposing enthusiast, Rick Thompson, will lead you through the rationale behind repurposing drugs for rare diseases. He will be joined by clinicians and academics active in the field, who together hope to convince you all that repurposing is relevant, impactful, and in need of support and attention to fulfil its potential. This session is suitable for drug repurposing novices, and experts alike. 

 Join this session to:

 

  • Learn the basics of repurposing, from generic drug and off-label use, to reformulation and licence extensions.
  • Understand the parallel factor that make repurposing right for COVID and right for rare.
  • View real data that shows repurposing is more common than you think.
  • See examples of the challenges and successes of academic repurposing in action
  • Ask your questions about repurposing in the rare space.

Confirmed speakers:

Rick Thompson

CEO, Findacure

 

Dr Rona Smith

Senior Research Associate, University of Cambridge

 

Prof. Indi Banerjee

Consultant Paediatric Endocrinolgist, Manchester University NHS FT

 

John Liddicoat

Senior Research Associate, University of Cambridge

 

12:15 – 13:00 BST, Breakout sessions

Pitch 'n' mix

These sessions will include quick fire lightening talks from different organisations, who will have five minutes to ‘pitch’ their chosen subject matter. The presentations are guaranteed to provide great conversation starters for the following networking session, where you will have chance to mix with your fellow attendees and share your thoughts.

If you would like to talk at our conference and want the challenge of covering a topic in just five minutes, submit a lightning proposal!

Pitch 'n' mix

These sessions will include quick fire lightening talks from different organisations, who will have five minutes to ‘pitch’ their chosen subject matter. The presentations are guaranteed to provide great conversation starters for the following networking session, where you will have chance to mix with your fellow attendees and share your thoughts.

If you would like to talk at our conference and want the challenge of covering a topic in just five minutes, submit a lightning proposal!

Martin Twycross

Manager, Dendrite Clinical Systems Ltd

 

Dr Kim Daybell

Junior Doctor and Paralympian 

 

Josie Godfrey

Co-foundeer & CEO, Realise Advoacy

 

Pushpa Hossain

RWE Manager, HCD Economics 

Sophie Liddell

Programme Manager for Translational Research, MRC

14:00 – 16:00 BST, Workshop sessions

Kickstart drug repurposing: smashing the roadblocks on the route to patients

Taking your repurposing candidate into the clinical space and delivering it to patients is a huge challenge. Hear the outcomes from LifeArc and Pinsent Mason’s repurposing roundtable event, and work with other rare disease community members to figure out how to plot your way through some of the roadblocks encountered along the drug repurposing roadmap. 

The aim of the session?

  • Understand the best routes to drive drugs towards the patient 
  • Devise strategies to overcome legal, regulatory and access barriers

Kickstart drug repurposing: finding treatments through drug redevelopment

Join Healx to discover the role drug development plays in finding potential treatments for rare and ultra-rare conditions. 

In this session you will learn: 

  • Key considerations for once you have a drug candidate
  • Working with industry: should you work together – and if so, how?
  • How to go about preclinical testing 
  • What are the important types of data for drug redevelopment?
  • The different drug redevelopment pathways and how to choose the right one for your project

Hosted by:

Hosted by:

Confirmed speakers:

Dr Bruce Bloom

Chief Collaboration Officer, Healx

Dr Clara Tang

Business Manager, Alliance Strategy, Healx

Wednesday 16th June 2021

09:00 – 11:00 BST, Virtual main stage

Drug repurposing in action (part I)

Repurposing matters at every level – from big pharma to the rarest patient.

In this session we will hear how people across this spectrum engage with repurposing in the rare disease space. On the largest scale, companies like AstraZeneca have been looking to open up their libraries of shelved compounds to academic collaboration. This work helps to move novel drugs into areas outside of company expertise, and to deliver patient benefit.

From this macro perspective, we will move to our focus to the personal stories of a patient and clinician. We will see how an ultrarare condition can impact every facet of a patient’s life, and how a repurposing trial had a huge impact for a short time. Viewing this story from both the patient and clinician perspective will reveal the challenges and motivations on both sides, as well as highlighting hopes for the future.

Confirmed speakers:

Mandy Sellars

Patient Representative, PIK Related Overgrowth Spectrum

Prof. Robert Semple

Professor of Translational Molecular Medicine, University of Edinburgh

 

Kelly Gray

Open Innovation Program Manager, AstraZeneca

 

Catriona Chaplin

Medical Student, Barts and the London School of Medcine and Dentistry

 

Georgios Drakakis

CEO, Purposeful

Ivo Timmermans

CEO, Pleco Therapeutics 

Jess Hobart

Co-Chair, The UK Mastocytosis Support Group 

11:15 – 12:15 BST, Breakout Sessions

Navigating and using IP effectively to make the most of repurposing opportunities

In this session you’ll learn everything there is to know about securing Intellectual Property (IP) on second medical uses. You’ll discover the role of patent attorneys, how to navigate IPs and when to consider third party IPs and secondary filings. Discuss the value of an IP strategy and more.

Register for this breakout session, led by Pintsent Masons LLP to explore:

  • How to discover which other patents are out there
  • What is involved in getting patent protection yourself
  • The level of difficulty in getting second medical use patents – How much work do you need to have done?
  • What pharmaceutical companies look for from an IP perspective when partnering – Is it different for repurposing?
  • Should IP be one of the key drivers behind repurposing initiatives or is an IP strategy more of a ‘nice to have’

Repurposing and EU: What can European collaborations and consortia bring to your repurposing project

For research in general, and rare diseases in particular, international partnerships and collaborations are of the utmost importance. Whether at national or international level the EU has supported a wide range of projects in the repurposing field.

This breakout session, led by Anton Ussi (EATRIS ERIC) will examine some of these different projects, what the community can learn from them, and how they can help take your repurposing project to the next level, such as:
 

  • The work of the IRDiRC task force in establishing guidelines for clinical development and repurposing in rare diseases.
  • How networks like EATRIS can help connect relevant researchers and infrastructures to drive projects forward.
  • Examples of successfully funded repurposing projects at a national level.
  • Regulatory initiatives – the EMA STAMP scheme.
  • How can we encourage further international collaboration for increased patient impact in repurposing?

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

Whenever developing a new treatment for any condition, your entire development process will be guided by your disease knowledge. In the world of rare diseases, that information is often scant, so the more data that can be collected and combined the better the development process. In this session Femida Gwadry-Sridhar will explore the true value of disease specific data in the drug development process, and the central role that patient-driven registries can play in driving the research agenda in a direction to deliver meaningful patient benefit.

Join to discuss:

 

  • The role of registries and patient data in drug development
  • How the ownership of data can impact its value in research
  • The importance of data interoperability and data sharing
  • The central role that data can play in the development of a repurposed drug

Confirmed speakers:

Nicole Jadeja

Life Sciences Partner, Pinsent Masons LLP

Tom Leonard

Partner, Kilburn & Strode LLP

Damien O’Farrell

Senior Patent Counsel, GSK

Anton Ussi

Operations & Finance Director, EATRIS ERIC

Dan Lewi

Head of Business Development & Patient Advoacy, Pulse Infoframe

Femida Gwadry-Sridhar

Founder & CEO, Pulse Infoframe

13:00 – 14:30 BST, Virtual main stage

A 19 year journey: the AKU story

Our keynote panel will take you on a 19-year journey to discuss what it took to develop, approve and reimburse nitisinone for AKU patients. 

The AKU nitisinone repurposing story highlights the power of cross-sector, international collaborations, as together they took nitisinone from a failed trial to an EMA approved treatment for an ultra rare condition. 

Attend our panel session to learn:

  • How patient groups were able to support patient recruitment and retention over a 3-year phase three study
  • How a clinical trial protocol was designed for an ultra-rare condition where blinding was impossible
  • How a core scientific team came together to deliver the pre-clinical research and developed new endpoints for the clinical trial
  • The regulatory hurdles encountered and how planning early on in the process sped approval
  • Why one AKU patient agreed to be part of the non-treatment arm of the trial knowing that he wouldn’t be treated with nitisinone. He made that decision for the wider benefit of AKU patients – a truly selfless act!
  • The role that collaboration and strong leadership from the clinical team played in the delivery of the treatment to patients

Plus many more insights and perspectives from our expert panel!

Confirmed speakers:

Rick Thompson

CEO, Findacure

 

Nick Sireau

CEO & Chair, AKU Society 

 

Ciarán Scott

Head of Projects & Communications, AKU Society

Prof. L Ranganath

Chief Investigator, DevelopAKUre

  

Dr Tony Hall

CMO, Healx

 

Christa van Kan

Independent Consultant, Kan-Do Consultancy

Prof. Jim Gallager

Trustee, AKU Society

Tony Esmond

Patient representative & trial participant

 

15:00 – 17:00 BST, Virtual main stage

Drug repurposing in action (part II)

To deliver success in rare repurposing requires some structural change, along with determination, flexibility, and focus.

This session will open with a close look at NHS England’s new Repurposing Medicines Programme, and the potential changes this exciting project can bring to the field. From here we will examine the challenges faced in maintaining a clinician-led trial in the COVID world, and the world of repurposing from the perspective of a small patient-centric biotech.

We will close the session and conference with an in-depth look at the journey of Dr David Fajgenbaum, and how his personal diagnosis and determination has led to a revolution in the world of Castleman’s Disease.

Confirmed speakers:

Dr David Fajgenbaum

Co-founder & Executive Director, Castleman Disease Collaborative Network

 

Taylor Fields

Senior Vice President, Intrabio 

 

Prof. Tim Barrett

Professor of Paediatrics, University of B’ham

Ania Korsunska

Biomedical Leadership Fellow, Castleman Disease Collaborative Network

Rosie Lovett

Head of Medicines Repurposing, NHS England

 

Charlene Rigby

President, STXBP1 Foundation

 

Marni Cartelli

Board Member, Danny’s Dose

Carlos Javier Alméciga-Díaznia

Associate Professor, Pontificia Universidad Javeriana

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