RAREfest20: Vibrant. Vital. Virtual.

'Thank you to Same But Different for sharing these wonderful images and to the individuals for sharing their stories.'
28 Nov 202011/28/2020 10:0011/28/2020 16:30 Europe/London RAREfest20 RAREfest20: Vibrant. Vital. Virtual. https://rarefest20.vfairs.com/ CRDN false MM/DD/YYYY
00
Days
00
Hours
00
Minutes
00
Seconds

An award winning festival that is as unique as the patients it champions.

Featuring the brightest minds in rare disease research, the innovators of life-changing tech, the pioneers in rare disease medicine and the patients whose powerful voices must be heard.

For the experts. For the curious. For everyone. For FREE!

Join us on November 28th for RAREfest20.

Interactive exhibits and demos

Expert talks and panels with Q&A

Poster and film gallery

Meet experts & each other with networking tech

Competitions & games

Global audience

"Great to hear about the scientific discoveries that will revolutionise healthcare!"

– RF18 attendee

"RAREfest was great for raising awareness about rare diseases and bringing scientists and public together"

– Prabha, Horizon Discovery, RF18 exhibitor

Event Highlights

RAREfest20 promo video

Interactive virtual experience

Live talks with Q&A

Interactive exhibition and networking zone

Speakers

Dr Giles Yeo

Principal Research Associate, MRC Institute of Metabolic Science, University of Cambridge

 

Read More →

Adam Pearson

Actor, presenter, speaker, owner of a rare disease and disability rights campaigner.

 

Read More →

Onno Faber

Entrepreneur, public speaker, rare disease patient. Co-founder and CEO, Rarebase

 

Read More →

Dr Jenny Dickens

Clinician scientist, respiratory consultant, Addenbrooke’s, Royal Papworth, CIMR

 

Read More →

Prof Stefan Marciniak

Professor of Respiratory Science, Cambridge Institute for Medical Research (CIMR)

 

Read More →

Dr Melita Irving

Consultant, Clinical Genetics, Guy's and St Thomas' NHS Trust, Author.

 

Read More →

Lucy McKay

Founder & CEO, Medics4RareDiseases, trained doctor.

 

Read More →

Dana Perella

Founder, Cookies for Cures, raising funds for rare disease research one cookie at a time.

 

Read More →

Prof Bobby Gaspar

CEO, Orchard Therapeutics, a pioneer in gene therapy, UCL GOSH Institute of Child Health.

 

Read More →

Dr Kat Arney

Science writer, broadcaster, public speaker. Founder, First Create The Media.

 

Read More →

Maria Picone

Caregiver, Co-Founder & CEO, TREND Community, USA based.

 

Read More →

Georgina Morton

Founder & Chairperson, ArchAngel MLD Trust.

 

Read More →

Tom Almeroth-Williams

Communications Manager, University of Cambridge, rare disease dad.

 

Read More →

Daisy Marriott

Communications Assistant, Rare Revolution Magazine, Cholesteatoma patient

 

Read More →

Eddison Miller

Youth Ambassador, Rare Revolution Youth, Xeroderma Pigmentosum patient

 

Read More →

Georgia Hart

Youth Ambassador (teens), Rare Revolution Youth, Friedreich's Ataxia patient

 

Read More →

Ceri Hughes

photographer, art director, Same But Different

 

Read More →

Dr Shirlene Badger

Illumina

 

Read More →

Nikita Zubkov

Research Assistant, Cambridge Institute of Medical Research

 

Read More →

Dagmar Bennett

Sculptor & Creative Producer, Fellow Royal Society of Arts

 

Read More →

Graham Miller

Documentary photographer, Founder, Really Real Resources

 

Read More →

Rudy Benfredj

Co-founder & CEO, Mendelian

 

Read More →

Jordan Mossom

Documentary photographer, living with muscular dystrophy

 

Read More →

Ross Lannon

Blogger (A Life on Wheels), living with Spinal Muscular Atrophy

 

Read More →

Prof. Tim Cox

Professor of Medicine, University of Cambridge

 

Read More →

Vicky Donald

Rare disease mum to Holly with Neurofibromatosis type 1

 

Read More →

Eimear Rutherford

PhD student at the Cambridge Institute of Medical Research

 

Read More →

Simone Manso

Head Neurofibromatosis Strategic Partnerships, Healx

 

Read More →

Jason Mellad

Co-Founder & CEO, Start Codon

 

Read More →

Dr Caroline Hargrove

Chief Technology Officer, Babylon Health

 

Read More →

 

Exhibitors

DR LUCY MCKAY MEETS DR MELITA IRVING

THE DNA DOC

WELLCOME GENOME CAMPUS

GETTING TO GRIPS WITH GENOMICS

HEALX

AI-POWERED, PATIENT-INSPIRED TREATMENTS

CAMBRIDGE STEM CELL INSTITUTE

STEM CELLS, DISEASE AND YOU

EPAG FOR EPICARE, RARE EPILEPSIES

THE BRAIN GAME

PUFF OF SMOKE

AN ILLUSTRATED DIAGNOSTIC JOURNEY

CONCEPTIONEERING

BUILDING A MORE ACCESSIBLE WORLD THROUGH TECHNOLOGY

WELLCOME-MRC INSTITUTE OF METABOLIC SCIENCE

METABOLIC TREASURE

COOKIES4CURES

MADE WITH HOPE, BUTTER & LOVE. FUNDING CURES ONE COOKIE AT A TIME

JORDAN MOSSOM

DAYTIME DISABILITY, A DOCUMENTARY PHOTOGRAPHY PROJECT

MICROSOFT RESEARCH

PROJECT TOKYO, DESIGNING FOR INCLUSIVITY

SAME BUT DIFFERENT

RARE AWARE PHOTOGRAPHY AND “JOURNEY OF HOPE” FILM

LIFEARC

THE CHARITY TURNING PROMISING SCIENCE INTO PATIENT BENEFITS

MUSCLEHELP FOUNDATION

DISCOVER THE VIRTUAL #POWEROF657

EASTERN ACADEMIC HEALTH SCIENCE NETWORK

TURNING GREAT IDEAS INTO POSITIVE HEALTH IMPACTS

WELLCOME GENOME CAMPUS

LEARN MORE ABOUT GENETIC COUNSELLING

AllStripes

Be part of multiple studies for your (or your loved one's) condition without leaving home

Really Real Resources

Inclusive Stock Photography

Cambridge Science Centre & Earswitch

Ears: Hearing and Speaking

Cambridge Rare Disease Network

Raising awareness, collaborating, supporting

Medics4RareDiseases

Helping Medics to Spot the Zebras and Dare to Think Rare

 

Agenda

Track 1
9.00

Watch the welcome film, download the agenda, visit exhibits, chatrooms, info desk and on demand content

9.45 – 10.45

A Journey of Hope: Ceridwen Hughes, Shirlene Badger & Tom Almeroth-Williams

This recorded discussion & short film highlights the reality of both the search for a diagnosis and the impact of the diagnostic moment.

10.45 - 11.15

REMO Networking - login to Remo to join a table, chat and mingle - cameras and audio on

11.15 – 11.55

Powering up rare diseases with Artificial Intelligence

Panel discussion: How human intelligence and tech combined can help diagnose and treat earlier and can analyse social media to capture to understand diseases from patient and caregiver perspectives.

Simone Manso, Rudy Benfredj, Maria Picone & Caroline Hargrove

12.00 - 12.45

REMO Networking - login to Remo to join a table, chat and mingle - cameras and audio on

12.45 – 13.30

Lung Doctors: Rare, Well Done

Some of the Cambridge Institute of Medical Research Team present their rare lung disease research.

Presentations by Dr Jenny Dickens, Professor Stefan Marciniak followed by a panel discussion and Q&A joined by Jess Bartlett, Eimear Rutherford and Nikita Zubkov

14.00- 14.45

Gene Therapy for Rare Disorders

Professor Bobby Gaspar and Georgina Morton join Profressor Tim Cox in a pre-recorded fireside chat followed by live Q&A. Georgina’s daughter joined a clinical trial of Gene Therapy for a MLD in 2014.
Bobby is a Gene Therapy pioneer. They share their hopes and views on newborn screening with Tim.

15.00 – 15.40

Is Obesity a Choice? Dr Giles Yeo in coversation with Dr Kat Arney

Giles'studies research in rare diseases of obesity has given us new insight into normal variations of body weight. He believes understanding rare conditions brings benefit to broader society.

15.40 – 16.00

REMO Networking - login to Remo to join a table, chat and mingle - cameras and audio on

16.00 – 16.40

Solving the problems of rare disease

Rare disease is a complex problem, and although every disease is different, as patients they find themselves in the same boat. Onno and Jason discuss solutions.

Onno Faber in conversation with Dr Jason Mellad

16.40 – 17.00

Unique Feet: Chameleons

Meet Cambridge Rare Disease Network’s Children’s Community Group
Join our community of children affected by different rare conditions as they emerge from their cocoon of COVID-19 social isolation to be together again, blending and adapting to their 'new normal' like chameleons

Dr Gemma Chadrtillake, CRDN Chair and Jo Balfour, CRDN Managing Director and Festival Manager - closing remarks

17.00

CLOSE

Track 2
9.00

Watch the welcome film, download the agenda, visit exhibits, chatrooms, info desk and on demand content

09.00 - 10.45

Nothing on Stream 2

10.45 - 11.15

Rare Disease Myth Busters and Quiz

Rare Youth Revolution: Daisy Marriott, Georgina Hart & Eddison Miller

Have you ever been told you don’t look sick? Or maybe someone has asked you a question about your disability that has left you cringing inside. Join Rare Youth for myth busting and quiz!

12.00 – 12.45

The DNA Doctor Live! Understanding your genetic code

Dr Melita Irving is joined by Dr Lucy McKay as she extracts DNA live! Don’t worry, there won’t be any blood and gore around, just a few juicy strawberries and some washing up liquid! Fire away with your genetics questions!

13.15 - 14.00

How do we start this Conversation?

Adam Pearson leads a panel discussion with Ross Lannon, Jordan Mossom, Graham Miller, Vicki Donald, Dagmar Bennett.

Diability activists, artists, phootgraphers and scoial media pionrrs discuss the question "How do we finesse the art of starting, maintaining and finishing conversations about complex subjects?"

14.40 – 15.00

Rare Youth: Hot Topics

The team talks about growing up with rare conditions and managing mental health whilst going through life’s sometimes scary, but exciting, milestones in education, employment and relationships.

Daisy Marriott, Eddison Miller, Georgina Hart, Katrina Brooks , Katy Baker, Katie Callaghan, Nazhi Forrest

15.00 - 16.00

Made with Hope, Butter, and Love: Cookie Decorating for Cures

Dana Perella joins us live from the US for a cookie buttercream icing decorating lesson where she’ll be telling us a bit more about her incredible fundraising mission for rare disease research

"I met some new people keen for collaboration and really widened my network"

– Rebecca Pender, RF18 Speaker

"I enjoyed the inclusiveness of the event, across a broad range of diseases and issues"

– Dave Carter, EAHSN

Sponsors

FAQs

Q. Who is this event for?

A. RAREfest is for everyone! There are talks, activities and exhibits for all ages, all levels of interest, experience and expertise. For kids, young people and adults. For the curious and the experts. Everyone welcome.


Q. Do I need to register?

A. Yes. Please register through this platform for all attending, including children. You will then receive your login details.


Q. Will I be able to take away any documentation?

A. Yes. You'll receive a virtual 'swag bag' to download documents to. You can access files in your Swag Bag for 2 weeks after the event and email them to yourself or others.

Q. Do I need to install any software to be able to attend?

A. No. This is an online event. You can participate from anywhere in the world as long as you have Internet access. The event is accessible from desktop, mobile and tablet devices.


Q. How long is the event content available for?

A. Content will be live on Sat 28 Nov and available on-demand for 30 days following.


Q. Who do I contact for troubleshooting on the day?

A. Login to the platform and visit the virtual information desk which will be manned by an actual person :-)

Media Partners