CRDN’s RAREfest20 Exhibition

RAREfest20

A FREE interactive science, technology and arts exhibition alongside talks and films. For the clued-up and the curious, whatever your age

Cambridge Rare Disease Network - Events 1

Heartwarming, uplifting and informative, the world’s first-ever festival on rare diseases drew huge crowds to the Guildhall over the weekend of November 30 & December 1″ – Cambridge Independent News. Click the link to read the article

SAVE THE DATE for RAREfest20!

Free to attend, RAREfest20 is a full day Cambridge Rare Disease Network festival featuring interactive hands-on exhibits showcasing cool science, visionary technology, and pioneering organisations improving lives and bringing hope to those affected by rare diseases.  Alongside the exhibition there’ll be inspiring talks from experts and powerful patient voices, rare disease inspired art and films.

The RAREfest20 exhibition

is the second day of a 2 day festival which aims to provide a window into this relatively unknown area of science and to spark and quench curiosity. Join us at the Cambridge Guildhall, centrally located right on the market square. Open to patients, families, children, students, scientists, researchers, health profressionals, companies, the clued-up and the curious, whatever your age. Everyone’s welcome!

Cambridge Rare Disease Network - Events 2

For a sneak peek of what you can expect, head to our RAREfest18 pages brimming with cool companies, scientists, tech experts, health pros, patients and artists who took part in our first RAREfest exhibition. RAREfest20 exhibitor, speaker and film programme will be released later in the year. See the end of this post if you’d like to get involved. 

RAREfest18 – the highlights

RAREfest18 100% more interested in rare disease imageThe event was absolutely fantastic. It was obvious how much hard work had gone into it and gaining the balance between industry and public interest must have been a tough navigation, which was pulled off unbelievably well.” Steve Smith, Head of Rare Diseases & Gene Therapy, Next Phase Recruitment

“Lots of people we’ve spoken to today are passers-by. They’re out doing their Christmas shopping. That’s wonderful because it means the topic is broadening out to the wider community”. Harriet Gridley, No Isolation AV1 Avatar exhibitor

Why rare diseases?

This area of science and medicine has been neglected for too long, a challenge seemingly too overwhelming and difficult to overcome…3.5 million people with over 8000 rare diseases in the UK alone, 350 million worldwide. But things are changing and progress is picking up a pace and we want to celebrate that with you.

Genomics, genome-sequencing, CRISPR, Artificial Intelligence, robots, powerful patient voices and more research is bringing about a sea change in interest, awareness and hope for a brighter future for those affected.

How many rare diseases do you know?

Did you know that although individually rare, collectively rare diseases affect 1 in 17 people, with over 50% affecting children, many of whom have life-limiting conditions? Did you know there are @3.5 million people in the UK living with a rare disease at some point in their lives? And 350 million worldwide?

In the EU, a disease is classed as ‘rare’ when less than 1 in 2000 people suffers from it. There are between 6,000 – 8,000 discovered rare diseases, including more well known diseases such as Motor Neurone Disease (which Stephen Hawking lived with), ALS (of Ice Bucket fame), Cystic Fibrosis, and Huntingdon’s Disease.  Around 80% of rare diseases are genetically derived.

What about the other 8000? Can you name any others? Do you have a family member, friend or colleague who is affected?  Awareness of rare disease amongst the public and profressionals and the support and treatments available to those affected is sorely lacking and without knowledge and understanding it’s more difficult to make progress. RAREfest20 is the only exhibition gathering all stakeholders with the aim of educating, engaging and empowering people to challenge this status quo. Be the change you want to see in the world and join us!

GETTING INVOLVED IN RAREfest20

Do you have a great idea, research project, company or charity that is working to improve understanding, treatments options, accessibility and awareness for those affected by rare diseases? Do you want to get involved in helping create RAREfest20? We’re looking for exhibitors, speakers, films, and volunteers to get involved on all level.  Does your company want to support the global rare disease community by helping us bring RAREfest20 to the public? Everyone interested, in whatever capacity, can drop us a line at info@camraredisease.org for more information and further discussion. We’d love to have you on board!

Cambridge Rare Disease Day Rare-i-Tea Party 29 Feb 2020

Celebrate International Rare Disease Day with families and friends at CRDN’s RARE-i-tea party!

Cambridge Rare Disease Network (CRDN) invite you to join us for tea and cakes in celebration of this year’s extra rare Rare Disease Day which falls in a leap year on 29th Feb 2020.

We’re delighted to be holding this friends and families event at the wonderful premises of Cambridge charity, Rowan Humberstone, which supports adults with disabilities through art and creation activities.

Get your FREE tickets here https://www.eventbrite.co.uk/e/cambridge-rare-disease-day-rare-i-tea-party-tickets-91776023557

WHO IS THE EVENT FOR?

Everyone! This is a public event, open to all – children, families, those affected by rare disease and those working with them, students, company representatives, scientists, healthcare professionals, friends of CRDN. All welcome.

WHAT’S ON?

There will be tea, coffee, soft drinks and cakes for sale.

Children can help us create a Rare Disease Day handprint collage in the art room or have their face painted!

There’ll be information stands and some fun science games

Take time out to watch some rare disease inspired short films from our RAREfest18 event on a showreel

GETTING THERE & PARKING

Rowan Humberstone is set on a residential street sandwiched between Elizabeth Way Bridge and Chesterton Road. There is a residents parking scheme in the street but blue badge parking is fine and there is one disabled parking space outside the venue. At either end of Humberstone Rd there are metered parking places (metered until 5pm 50p per 30 mins).

If cycling or walking from town, Rowan is just over the Cutter Ferry Bridge from Midsummer Common and there are cycle racks outside. There are buses every 10 mins along Chesterton Road, a short walk away. See the map below to get your bearings.

HOW MUCH DOES IT COST?

Entrance is free although we encourage attendees to make an appropriate donation to help cover our venue and staffing costs. Refreshments will be on sale so please bring cash.

Cambridge Rare Disease Network - Events 3
Cambridge Rare Disease Network - Events 4

For more info on Rare Disease day see the official website https://www.rarediseaseday.org/

WHAT IS RARE DISEASE DAY?

Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

WHY MARK RARE DISEASE DAY?

Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point  in their life. Despite this, there is no cure for the majority of rare diseases and many go undiagnosed. Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.

WHO GETS INVOLVED IN RARE DISEASE DAY?

Rare Disease Day events are down to hundreds of patient organisations all over the world who work on a local and national level to raise awareness for the rare disease community in their countries.  Since Rare Disease Day was first launched by EURORDIS and its Council of National Alliances in 2008, thousands of events have taken place throughout the world reaching hundreds of thousands of people and resulting in a great deal of media coverage. We especially thank our official Rare Disease Day partners, the National Alliances. These are umbrella organisations who group together several rare disease organisations in a given country or region. Click on a logo of one of the National Alliances to go to their website.

WHERE IS RARE DISEASE DAY CELEBRATED?

The campaign started as a European event and has progressively become a world phenomenon, with the USA joining in 2009 and participation in over 100 countries all over the world in 2019. It’s hoped even more will join in 2020. Some countries have decided to raise rare disease awareness further, for example, Spain declared 2013 as the National Year for Rare Diseases.

WHEN DOES RARE DISEASE DAY TAKE PLACE?

The first Rare Disease Day was celebrated in 2008 on 29 February, a ‘rare’ date that happens only once every four years. Ever since then, Rare Disease Day has taken place on the last day of February, a month known for having a ‘rare’ number of days.

At rarediseaseday.org you can find information about the thousands of events happening around the world on the last day of February. If you are planning an event, register your event details on the Post your Event page to get your event listed on the site!

RAREfest launch night: music, dance, talks

RAREfest18 is coming….Join us at the Guildhall on the Market Square in Cambridge for the launch of a brand new science, technology and arts festival for Cambridge! This #RAREfest18 launch event is an evening featuring powerful rare stories and talent expressed through both musical and dance performances…

Full line-up and information about this launch evening and the main RAREfest exhibition, films and talks event here.Tickets must be booked through Cambridge Live.

Pint of Science Rare Disease: The genomic revolution, searching for a cure for the 1 in 17

Pint of Science Rare Disease: The Genomic Revolution – Searching for a Cure for the 1 in 17. Rare diseases are conditions which affect fewer than 1 in 2,000 people but 1 in 17 are affected at some stage in their lives, some 3.5 million in the UK alone. 75% of rare diseases affect children and include rare cancers and well known conditions, such as cystic fibrosis and Huntington’s disease. 80% of rare diseases are caused by a defect in the genetic blueprint, sometimes a single spelling mistake in the three billion letters that make up the human genome, yet it can have devastating consequences for those living with the rare disease and their families.

New breakthroughs in genomic medici…

Snip, snip, snip: Correcting Defects in the Genetic Blueprint

Dr James Thaventhiran (MRC Clinician Scientist Fellow, Uni of Cam, Dept of Medicine)
Many rare diseases are caused by a defect in the genetic blueprint that carries the instruction manual for life. Sometimes the mistake can be a single letter in the three billion letters that make up the genome, with devastating consequences. Gene editing using ‘molecular scissors’ that snip out and replace faulty DNA could provide an almost unimaginable future for some patients: a complete cure.
...

Living with a Rare Neurological Disease: A Dad and Genetic Scientist Explores the Patient and Parent’s Perspective

Dr Charles Steward (Clinical Genomics at Congenica)
Genome sequencing and the 100,000 genomes project has led to breakthroughs in shortening the diagnostic odyssey and informing care for some with rare diseases. Charles, genetic scientist of 25 years and father to a child with a rare neurological condition, is involved in the project as a participant, parent and consultant. He explores the ups and downs faced by families trying to search for and understand the cause of their child’s disease.
...

“It’s Not All in My Head!”: The Complex Relationship between Rare Diseases and Mental Health Problems

Rebecca Nunn (Medical Student at University of Cambridge)
Rebecca Nunn, Medical Student at the University of Cambridge and owner of a rare disease, argues that the common experiences of rare disease patients have impacts upon the way in which their psychiatric care should be offered and managed, and that sensitivity and understanding surrounding these issues should be considered a necessary part of effective care for rare disease patients.
...

Rare Disease Pint of Science: Treasure your exceptions! May 2018

Cambridge Rare Disease Network brings a sip of Rare to the Cambridge Pint of Science Festival!

A rare disease is one that affects fewer than 1 in 2000 people. You might wonder why anyone would dedicate their life to studying a disease when only a handful of people would benefit from a cure? Why not study one of the big killers, such as cancer, tuberculosis or malaria? The significance of rare diseases is often not realised by people outside of the field, but they can provide valuable insights into the causes and progression of far more common diseases, help us better understand the fundamentals of modern science and medicine, and also lead to the development of life-saving drugs.
 

New Finding! Mutations outside of genes contribute to severe neurodevelopmental disorders

Patrick Short (PhD Student, Wellcome Trust PhD in Mathematical Genomics and Medicine)
 @patrick_j_short
The Deciphering Developmental Disorders project has sequenced the genome from nearly 10,000 families across the UK and Northern Ireland with one or more affected children. Despite these efforts, more than 50% of the families in this study remain without a genetic diagnosis.
Patrick will share new findings about how mutations are disrupting the expression of important genes in early brain development and highlight some of the global efforts to share data and sequence the genomes of hundreds of thousands of families.
...

Rheum with a view: Through the looking glass into rare joint diseases

Dr Jagtar Singh Nijjar(NIHR Clinical Lecturer in Rheumatology at the University of Cambridge)
 @JagtarNijjar
Rare inflammatory bone diseases cause significant pain and swelling of bones
and joints. In partnership with the NIHR BioResource Jagtar will establish a
national patient cohort that will allow us to look into the genetics of these
diseases and also carry out clinical trials. In this talk he will explore what rare
diseases can teach us about the common and the immense power of patient
cohorts and patient participation in research
...

Unpicking the Genetic basis of Intellectual Disability

Professor Lucy Raymond (Professor of Medical Genetics and Neurodevelopment and Honorary Consultant at the Cambridge Institute for Medical Research, University of Cambridge. Her group aim to identify and understand the genetic causes of intellectual disability and their work has identified a number of new syndromes and greater understanding of the sequence variation of the human genome.)
 @imagineidnews
Intellectual disability is present in 0.5% of the population and affected individuals may have difficulty learning and developing skills for everyday life. My research goal is to understand the genetic changes that present in the DNA of these patients, in the hope of characterizing the causes. My team has conducted detailed analysis of the whole DNA genome in affected families, allowing them to identify novel genes that contribute to disease. I will explain the vital role their participation plays in a collaborative initiative to analyse the genomes of 10,000 patients in unprecedented detail.
...

Pint of Science is a grassroots non-profit organisation that has grown astronomically over the few years since two people decided to share their research in the pub. Although our mission has expanded, our core values remain the same: to provide a space for researchers and members of the public alike to come together, be curious, and chat about research in a relaxed environment outside of mysterious laboratories or daunting dark lecture theatres. We believe that everyone has a place at the table to discuss the research going on both on our doorsteps and far beyond. Our missions and visions are based around the people that matter most: our audience, volunteers, speakers, and our wider research community. 

Their Missions

  • Develop a space where audiences are engaged with research; where walls are broken down and everyone has the opportunity to share their thoughts, questions and ideas.
  • Provide event organisers with the tools to allow them to use their own creativity and plan events showcasing the research that is going on in their area, whilst developing cross-disciplinary skills that will prove valuable in the workplace and beyond.
  • Equip speakers with training to refine and develop their public engagement skills and give them the confidence to share their story in an approachable manner with a new audience.
  • Push forward research and trust in science by encouraging open and transparent conversations between the research community and the wider public, and in turn develop a culture of good public engagement which is accessible to all.

 Visions

  • To foster an environment for the audience in which everyone is comfortable to attend, engage and cultivate curiosity.
  • To instill confidence, nurture key skills and provide a platform for event organisers to carry out public engagement in the community.
  • To inspire speakers to view public engagement as a creative outlet, and a worthwhile part of their work.
  • To encourage a world where anyone can have an opinion on science, developing new research ideas through a conversation where everyone can be involved.

 

History

In 2012 Dr Michael Motskin and Dr Praveen Paul were two research scientists at Imperial College London. They started and organised an event called ‘Meet the Researchers’. It brought people affected by Parkinson’s, Alzheimer’s, motor neurone disease and multiple sclerosis into their labs to show them the kind of research they do. It was inspirational for both visitors and researchers. They thought if people want to come into labs to meet scientists, why not bring the scientists out to the people? And so Pint of Science was born. In May 2013 they held the first Pint of Science festival in just three cities. It quickly took off around the world and now happens in nearly 400 cities. Read more here. Pint of Science received a Points of Light award by the Prime Minister in recognition of voluntary work and making a change in the community.

We are non-profit and ticket costs were introduced to ensure that we could become sustainable rather than a one-off. As well as our dedicated volunteers, Pint of Science relies on ticket money, donations, sponsors, and the universities and institutions involved to keep going. We’ve never received large grants or pots of money, we don’t even have an office. We’re built on the dedication, enthusiasm and commitment of all involved in organising and attending, as well as an occasional pint!

Locations and topics

full list of Pint of Science cities and countries can be found on our locations page. Our events broadly fall into the following topics:

  • Beautiful Mind – neuroscience, psychology and psychiatry
  • Atoms to Galaxies – physics, chemistry, maths, astronomy
  • Our Body – medicine, human biology, health
  • Planet Earth – geosciences, plant sciences, zoology
  • Tech Me Out – biotechnology, robotics, computers
  • Our Society – law, history, politics, policy, languages
  • Creative Reactions – art and science come together – click here for more info.

And in Cambridge there are speila topics RARE DISEASE and IMMUNOLOGY

 

Cambridge Rare Disease Summit Oct 23 2017, Robinson College

Cambridge Rare Disease Network - Events 5Cambridge Rare Disease Network - Events 6

Following the success of our 2 previous summits, we are pleased to announce our 3rd annual Cambridge Rare Disease Summit. The CRDN International Summit 2016 has been selected as a finalist for the Communiqué Awards for Excellence in Communications via a Live Event or Stand-Alone Activity

Venue: Robinson College, Cambridge will be hosting our event on 23rd October 2017

Costing: tiered pricing with early bird tickets and discount tickets for patients and patient groups, students and start-ups.


This day long event seeks to create a forum that brings together patient groups, healthcare, academics, researchers, biotech companies, and the pharmaceutical industry in a spirit of collaboration, innovation and passion to re-imagine and re-invent the Rare Disease patient journey.

Theme for Cambridge Rare Disease Summit: “Re-imagining the Patient Journey”

We will provide a morning of exploration of inspirational Rare Disease patient journeys where patients and patient carers have been partners in healthcare and treatment development. Take a walk with us through case-studies from early symptoms, dead-ends and steps forward to diagnosis, patient group formation, campaigning and research to pharma collaboration and drug development.

The afternoon will showcase pioneering work being undertaken in Cambridge and around the world to re-imagine and re-write the endings of Rare Disease Patient journeys from gene editing, drug re -purposing and pharma ‘adoption’ of rare diseases to empowering patient revolution, rare disease search engines and rare disease telemedicine nursing.


NEW FOR Cambridge Rare Disease Summit 2017

Patient groups have an opportunity to showcase posters in a Patient Journey gallery and all delegates will enjoy wide networking opportunities with exhibition stand holders from industry and patient organisations. For poster submissions guidelines see here https://camraredisease.org/index.php/crdn-summit-20..

Students4RareDiseases will be hosting a breakout session from 11 – 12.30pm. A range of speakers will give an overview for foundation doctors, medics and healthcare professionals in early stage training, GP registrars, nurses, pharmacists etc. Hear about the Rare Disease patient journey, the utility of the diagnosis, red flags, the 100,000 Genome Project and family planning https://en-gb.facebook.com/S4RDcam/ students4rarediseases.org/

No Isolation, a Norwegian tech company, will run a workshop showcasing their AV1 Avatar, a small robot designed to reduce isolation and encourage participation and interaction in education and daily life for children with chronic, lifelong illnesses.

We will be showcasing a new genetic rare disease search tool by https://www.mendelian.co/

Followed by a drinks and canape reception in the dining hall on site.

The Cambridge Rare Disease Summit full programme with speakers and timings can be viewed here https://camraredisease.org/index.php/crdn-summit-20…


Cambridge Rare Disease Summit Confirmed Speakers :

Dr Ségolène Aymé – Emeritus Director of Research at the French Institute of Health and Medical Research (INSERM). Expert in residence for rare diseases at the Brain and Spine Institute in Paris, and Founder and Editor-in- Chief, Orphanet Journal of Rare Diseases. Opening keynote speaker

Prof Bobby Gaspar – GOSHCC Professor of Paediatrics and Immunology, Consultant in Paediatric Immunology, Head, Rare Diseases Theme, Head, Molecular and Cellular Immunology Section, Infection, Immunity and Inflammation Molecular and Cellular Section, UCL Great Ormond Street Institute of Child Health

Dr Ana Mingorance – Dracaena Consulting, Chasing cures for neurological and rare diseases and author of eBook #ImpatientRevolution

Dr Rick Thompson – CEO and Head of Research, Finadacure, a Cambridge based charity empowering Rare Disease patients and developing drug re-purposing projects

Neil Dugdale – General Manager, UK and RoI, Sobi, Rare Disease pharmaceutical company

Kay Parkinson – CEO of CRDN and Alstrom Europe

Juliet Moritz – Executive Director, Patient Engagement and Strategic Development, Premier Research

Dr Owen Vaughan – Senior Director, Regulatory Affairs, ProMetic Pharma SMT Ltd

Daniel Lewi – CEO, Cure and Action for Tay-Sachs Foundation

Dr. Ignacio Hernández Medrano – co-founder and medical director of Mendelian.co, an online rare disease search engine developed at Imperial College London

Dr Simon Holden – Consultant Clinical Geneticist, Cambridge University Hospitals Trust

Dr. Gemma Chandratillake – Education & Training Lead – East of England Genomic Medicine Centre

Natalie Rebeyev– Cambridge Consulting Network lead for Rare Disease Nurse Network. PhD student University of Cambridge, Dept of Medicine

Saakshi Chadha – PhD in Medical Sciences at MRC- Cancer Unit. University of Cambridge. Consultant at Cambridge Consulting Network

Steffen Mio Kristiansen – General Manager, No Isolation, UK

Becky Nunn – Trainee Doctor – University of Cambridge

Mabella Farrer – Genetic Counsellor, Addenbrookes

Cambridge Rare Disease Summit Patient Journey Lightning Poster Presentations

  • Bardet -Biedl Syndrome UK – Tonia Hymers
  • Pitt Hopkins UK – Sue Routledge
  • The Teddington Trust – Nicola Miller
  • Vasculitis UK – Lynn Laidlaw and Suzanne Morris
  • Wyburn-Mason Syndrome/Acromegaly – Dan Jeffries

CRDN launch event: Parent entrepreneurship in rare disease

WE ARE FULLY BOOKED – BUT PLEASE, DO REGISTER AND JOIN US FOR THE EVENT, WE MAY HAVE SOME LAST MINUTE CANCELLATIONS.

 

Cambridge Rare Disease Network (CRDN) will host its launch event on the topic of Parent Entrepreneurship – When parents start companies to cure their child.”

 

Confirmed speakers are 

  • Mr Alastair Kent OBE, Director of Genetic Alliance UK;
  • Dr Nick Sireau, Founder of AKU Society and Findacure; 
  • Ms Kay Parkinson, Founder of ASUK Society; 
  • Dr Will Evans, Trustee of Niemann-Pick Disease Group; 
  • Dr Cesare Spadoni, Founder of aPODD Foundation. 

The event is kindly supported by Genetic Disorders UK, Findacure, Utah Rare, Cambridge Judge Business School, Innovation Forum, One Nucleus, Global Biotech Revolution and Stevenage Bioscience Catalyst.

 

Agenda:

  • 17.00: Welcome networking
  • 17.30: Lecture & panel discussion and Q&A’s.
  • 19:00: Networking and drinks reception
  • 20:00: End 
 
Thank you for your interest. We would appreciate it if you would share this event with colleagues and friends who might be interested.
 
Kind regards,

CRDN team

Rare disease diagnostics: Bringing genomics to the clinic

WE ARE FULLY BOOKED – please do register on the waitlist and join us early, we do expect some last minutes dropouts.

Genomic medicine is changing our world. The rapid decrease of the price of DNA sequencing has opened up numerous new possibilities, and is starting to enter clinical practice. 

However, even though we understand the genetic causes of 50% of rare diseases, early diagnostics remains a challenge. In the UK, it still takes an average of 6 years and visits to 8 doctors to get a diagnosis, and many people never get an answer at all.

By scanning through entire genomes at once, DNA sequencing has the potential to change this. Come discuss the opportunities and the challenges of this new technology in a clinical setting, with some of the experts in the field.

  • Invited organisations: 
    • Genomics England 
    • DDD project
    • PHG Foundation
    • DNAdigest
     
  • Agenda
  • 17.30: Doors open.
  • 18.00: Lecture/panel discussion and Q&A’s (10-15 min per speaker).
  • 19.30: Wine reception.
  • 21.00: End of event.
 
  • Speakers: 
  • Dr Caroline Wright, Project Manager, DDD project
  • Dr Gemma Chandratillake, Genetic Counsellor and Product Manager, Personalis
  • Dr Fiona Nielsen, Founder of DNAdigest
  • Dr Sobia Raza, Science Programme Lead, PHG Foundation
 
We are looking forward seeing you at the event.

 

With warm wishes,

The CRDN Team

Cambridge Rare Disease Network - Events 7

CRDN is a non-profit organisation aiming to create rare disease awareness and build a community within the Cambridge area. We are kindly supported by Findacure, Rare Disease UK, Genetic Disorders UK, Utah Rare, Cambridge Judge Business School, One Nucleus, BioBeat, Innovation Forum, Stevenage Bioscience Catalyst and Global Biotech Revolution, amongst others.
 

 

Cambridge Rare Disease Summit 2015

Cambridge Rare Disease Network is holding its first annual conference, the Cambridge Rare Disease Summit 2015, at the Cambridge Judge Business School. We’re bringing together 150 key stakeholders to debate how to best address the huge social and therapeutic unmet needs around rare diseases. We will discuss topics ranging from Alternative Funding Strategies, New Rare Disease Initiatives on the Horizon, the Potential of the Cambridge Cluster and Engaging with Pharma. Come and join us and add your thoughts, ideas and questions to the day.

We have an exciting line-up of speakers who are leaders in their fields. To include: Keynote video message for Prof Stephen Hawking, Centre for Theoretical Cosmology, University of Cambridge; Prof Sir Gregory Winter, Master of Trinity College and Co-Founder of Cambridge Antibody Technology; Associate Prof Matt MightParent Entrepreneur and Founder at NGLY1.org; Prof Steve Jackson, Head of CRUK at Gurdon Institute, Dr Nick Sireau, Founder of Findacure and AKU Society; Mr Alastair Kent, OBE, Director Genetic Alliance UK and Founder of Rare Disease UK; Ms Kay Parkinson, Founder of Alstrom Syndrom UK/EU; Dr Hermann Hauser, Founder of ARM and Amadeus Capital; Dr Bruce Bloom, President of Cures Within Reach; Prof Alan Barrell, Judge Business School; Dr Jonathan Milner, Founder of Abcam; and Dr Darrin Disley, Chief Executive, Horizon Discovery;Dr Anne Dobree, Head of Seed Fund, Cambridge Enterprise,  amongst many others.

Following the summit we will be hosting a drinks reception to which you are warmly invited. We invite you to then attend our gala dinner at St.Catherine’s College, Trumpington Street to close the evening.

See our website for the full programme:

https://camraredisease.org/conference/

Rare disease home nursing service debate

Is there a need for a rare disease home nursing service? Join our debate.

Join us on Thursday 17 March to share your views, ideas and solutions at an event chaired by Alastair Kent, Director of Genetic Alliance UK, and hosted by the Cambridge Rare Disease Network.

When: 6:00-9:00pm, Thursday 17th March
Where: Cambridge Judge Business School
Cost: free

About the event

Hiran Prag from the Cambridge Consulting Network will present the findings of his team’s report into the feasibility of a home nursing service, commissioned by CRDN.

Dr Larissa Kerecuk, Rare Disease Lead at Birmingham Children’s Hospital will also join us to share her knowledge and experience in this field. She will be accompanied by nurses she is working with from different organisations including their new nurses funded by Roald Dahl’s Marvellous Children’s Charity.

Also joining the panel is Helena Baker, Vice President of Nursing from the Medical Research Network http://www.themrn.co.uk

Following a discussion led by Alastair Kent OBE, you’ll have the chance to discuss these ideas further and network over a glass of wine or a soft drink.

Topics for discussion

To get you thinking, these are some of the themes we’ll be discussing:

* Rare disease and the need for specialist nursing
* Global nursing organisations
* Funding mechanisms of nursing organisations
* Rare disease in Cambridge, the UK and existing nursing services

Cambridge International Rare Disease Summit 2016

What can Cambridge contribute to global efforts in rare disease research?

Who’s leading the way in collaborative, innovative research, treatment and care for those with rare diseases?

How can we put patients and their families at the centre of all discussions?

Hear from those leading the way in rare diseases 

Where: Robinson College, University of Cambridge

When: Tuesday 25 October 2016

Costs: tiered pricing, with discount tickets for patient support groups, start-ups and students

Following the sell-out success of its first summit in 2015, the Cambridge Rare Disease Network is once again bringing international leaders and local experts together in Cambridge to bridge the gap between research, industry, business and patient groups. 

Anchored by powerful patient voices, this one-day conference will explore:

  • international rare disease innovations
  • new rare disease initiatives on the horizon
  • innovations in health
  • engaging and collaborating with pharma.

A wide delegate base, representing academia, healthcare, industry, business, patients support groups and more will allow delegates to explore potential collaborations and gain a broader understanding of opportunities in rare diseases.

Confirmed speakers include:

  • Avril Daly, Vice President of Eurordis
  • Ben Howlett MP, Chair of All Party Parliamentary Group (APPG) on rare, genetic and un-diagnosed conditions
  • Prof Patrick Maxwell, Regius Professor of Physic and Head of the School of Clinical Medicine of the University of Cambridge
  • Dr Tim Guilliams, CEO of Healx and Chair of CRDN
  • Dr Jonathan Milner, Chairman of Abcam plc and Milner Institute
  • James Taylor, Director of Corporate Development GlaxoSmithKline
  • Dr Andy Richards – Biotech Entrepreneur
  • Julie Walters – Founder of Raremark
  • Dr Lydia Meyer-Turkson – Consultant Business Strategy, Horizon Discovery USA
  • Dr Nick Sireau, Chairman of AKU Society and Findacure
  • Dr Olivier Menzel, President and Founder of BLACSWAN Foundation (Switzerland)
  • Alastair Kent, OBE, Director of Genetic Alliance UK and Chair of Rare Disease UK
  • Dr Paul Tunnah, CEO and Founder of Pharmaphorum Media
  • Karsten Barton, Head of Department, Frambu Centre for Rare Disorders (Norway)
  • Dr Alex Mackenzie – Care for Rare and Vice-Dean Research for the Department of Paediatrics at CHEO (Canada)
  • Dr Larissa Kerecuk – Rare Disease Lead at Birmingham Children’s Hospital
  • Dr Lucy Mackay, Co-Founder of Students4RareDisease
  • Dr Lucy Raymond, Professor of Medical Genetics and Neurodevelopment University of Cambridge 
  • Daniel Lewi, CEO of Cure and Action for Tay-Sachs Foundation
  • Dr Birgitte Volck, Head of Research and Development, Rare Diseases, GlaxoSmithKline
  • Dr David Pardoe, Head of Growth Projects, MRC Technology
  • Prof Steve Jackson, Senior Group Leader and Head of CRUK Laboratories, Wellcome Trust/Cancer Research UK Gurdon Institute

  • Emily Kramer-Kolingoff – Co-Founder and Executive Board Member of Emily’s Entourage

  • Dr Femida Gwadry- Sridhar, Founder and CEO of Pulse Infoframe Inc
  • Rebecca Stewart, Co-Founder and editor of Rare Revolution Magazine and Co-Founder of The Teddington Trust

We are holding a Round Table of Companies inaguaral meeting as a breakout session

Charired by Dr Tim Guilliams, CEO Healx

Attendees include: 

  • Evolution Education Trust – Dr. Jonathan Milner
  • Horizon Discovery and Locus Genetics – Dr Lydia Myer-Turkson
  • GlaxoSmithKline – James Taylor
  • Sobi – Neil Dugdale 
  • Alexion – Sarah Trafford-Jones
  • Raptor Pharmaceuticals – Amjad Hussain
  • Shire – Verity Thomas-James
  • MRC Technology
  • Geneadvisor – Dr Jelena Aleksic
  • Dr Nick Ibery – Royal Society of Medicine
  • New Philanthropy Capital, – Rachel Wharton
  • Findacure – Flóra Raffai
  • CRDN – Kay Parkinson, Dr Moharem El Gihani 
  • Emma Sutcliffe – Patient Centred
  • Dr Eija Makirintala – Altogame Ltd

 We’re also thrilled to host examples of beautiful portrait photos of children with rare and undiagnosed conditions loaned to us by ‘Same But Different’ http://www.samebutdifferentcic.org.uk/rare-project/

Following the formal proceedings we will continue the conversation over drinks at Robinson College. We then invite you to attend our gala dinner in the Crausaz Wordsworth Building to close the evening. 

RAREfest18: Science, techology & arts exhibition

RAREfest18! A first-of-its kind rare disease inspired festival conceived and brought to you by Cambridge Rare Disease Network (CRDN).

In Cambridge people come out in their droves to be dazzled and captivated by the annual Science Festival, it’s Festival of Ideas, the treasured Literary Festival and new to the circuit, Brainfest. We figured you simply can’t have too many festivals and it’s about time we had one of our own.

 So, are you curious about the world? Are you fascinated by the wonders of medicine and science? Are you intrigued by how technology can make people’s lives better? Do you like to learn about other people’s lives and dispel some of the mystery? Then RAREfest18 is for you.

WHY ATTEND RAREfest18?

  • Free to attend, this 2 day festival is shaping up to be your winter highlight
  • Bring your friends, family and colleagues along to this exciting festival of hands-on science and technology exhibits, talks with experts and a rare film festival?
  • Don a lab coat and goggles, take a DNA taste test, peer down microscopes, play genetics games, meet actors and robots in the same room, test out virtual reality
  • Meet researchers, scientists, engineers, rare advocates and people involved in patient advocacy groups
  • Listen to talks with conference headsets, get involved, ask questions, dispel some of the myths

 

To find out more about Saturday’s exhibitors, speakers and films visit the Cambridge Rare Disease Network website where you’ll find more about the inspiration behind this new festival, meet the speakers, exhibitors and performers taking part, you can check out the short film showreel and meet the Cambridge Rare Disease Network team working behind the scenes. The full line-up is now available to view! You can also find information about our Cambridge Rarer Disease Network’s related RAREsilutions poster competition for schools. We have created 3 ‘Challenge Films’ which tell the story of a person affected by a rare condition who would like your help in creating a solution to an everyday problem they face. Can you help Vaila design a piece of fully accessible playground equipment for her daughter and all the other children in the village to enjoy? Or perhaps you can help Harsha design a device which would help her pull an airport trolley when she may also have her guide dog or cane to carry due to her rare form of blindness? The winning posters will be showcased at the exhibition.

RAREfest saturday line-up - click here to go to website

                    Exhibitions…what’s on?            Who’s talking about what?        Film showreel coming soon 

Cambridge Rare Disease Network - Events 8

Cambridge Rare Disease Network - Events 9

Cambridge Rare Disease Network - Events 10Cambridge Rare Disease Network - Events 11

Come and enjoy the whole RAREfest experience. Tickets are also available (and must pre-booked as this is a seated event) for the RAREfest launch evening event featuring rare speakers who have achieved incredible feats, rare musicians and our Cambridge Rare Disease Network children’s rare dance group, Unique Feet – a collective of 10 children with different rare conditions.

RAREfest Friday 30 Nov - tickets

This RAREfest18 launch evening opens the festival bringing people with rare conditions to the Cambridge Guildhall stage to make you smile, laugh, feel motivated to act and leave filled with a healthy curiosity about this little-known area of science and life. Arrive early and stay late to enjoy a drink and socialise.

Confirmed performers with more in the pipeline…  see the RAREfest website for more details and the full agenda with performer bios https://www.camraredisease.org/rarefest 

Places must be booked in advance. Get your free ticket through the Cambridge Live website here https://www.cambridgelivetrust.co.uk/tickets/events/rarefest-launch-event-2018

Adam Pearson, actor (Under the Skin)  award-winning documentary and tv presenter and campaigner for disability rights will be ‘in conversation’ with Dagmar Bennett, a sculptor who has collaborated with Adam to create a hyper-realistic bust of him to raise awareness and prompt discussion about face equality. Adam lives with a rare condition called Neurobromatosis type 1.

Adam Pearson actor and Dagmar bennett sculptor

RAREfest Friday 30 Nov speakers and musicians

A huge thank you to our sponsors for supporting this event – we couldn’t do it without you and your belief in our mission and vision.Cambridge Rare Disease Network - Events 12

WP Feedback

Dive straight into the feedback!
Login below and you can start commenting using your own user instantly

CRDN sign up to newsletter

Sign up to our monthly newsletter packed with news & events. Join our thriving rare disease community.

 

You have Successfully Subscribed!