RAREsolutions 2020: Change by Design – STEM poster Competition for young people

RAREsolutions 2020: Change by Design – STEM poster Competition for young people

RAREsolutions 2020: Change by Design – STEM poster Competition for young people

Cambridge Rare Disease Network - RAREsolutions 2020: Change by Design - STEM poster Competition for young people 1
Hannah & Nicole, the winners of the RAREsolutions competition 2018 with Jonathan Milner

Enthusiasm, Curiosity, Initiative

Winners of RAREsolutions poster design competition 2018 share their insights for this year’s challenge!

If you take a sprinkle of artistic talent and a splash of passion for medicine and health, you have a winning formula for success! Nicole and Hannah pooled their talents to produce a brilliant entry for our first ever RAREsolutions STEM poster competition, impressing the judges with their creativity and determination for making a difference.

 

RAREsolutions20 poster design competition logo

RAREsolutions is a poster competition with a conscience, pushing for change by design. It’s part of the RAREfest20 rare -disease inspired festival and is open to anyone in Years 7-13.  All you have to do is watch the RAREsolutions challenge videos, pick the one that inspires you most, and go for it.

As we launch our new and exciting RAREsolutions 2020 STEM competition, let’s hear from the dynamic duo who scooped the prize last time.

Hannah & Nicole share their thoughts about the RAREsolutions design competition

Why did you enter the competition?

Hannah: We found out about the RAREsolutions poster competition in our school bulletin. I was immediately drawn to take part as it really struck a chord with me, having recently learnt about genetics in biology. I have a real passion for medicine and health! I knew instantly I wanted to take part with my friend Nicole, who is really good at art and design. Combining our talents and being able to work collaboratively really appealed to us. It’s not often we get to work as a team!

What inspired your design?

Nicole: The first steps was to decide which challenge we wanted to design a poster for. On the CRDN website there were three different challenges set from people with rare conditions. They asked us to create innovative solutions to help them live more independent lives.

Hannah: The one that really resonated with us came from Eilidh. The quest to make playtime more fun and accessible. Eilidh has KAT6A syndrome, an extremely rare genetic neurodevelopmental disorder. This can impair or alter growth and development of the brain and central nervous system.

What research did you do?

Nicole: We had a few weeks to research the condition, contact Vaila (Eilidh’s Mum), find a solution and design the poster. It was amazing to take part in a project that combined science, research skills and design.

Hannah: RAREsolutions was not dry like the usual essay writing competitions and gave us the change to come up with a real-world solution. Life can throw up all sorts of accessibility challenges for those living with sensory and physical disabilities, but actually they are people just like you and me. They want to live life to the full, but the environment makes that tough.

I’d recommend taking part in this competition to anyone. It not only helps patients with rare diseases live better lives, but also changes your own life!

Hannah

Winners of the RAREsolution 2018 competition

You presented your winning idea at RAREfest18. How did that feel?

Nicole: We were hugely proud of our achievement but also daunted at the idea of presenting to an audience of genetic experts, having only previously made presentations at school!

Hannah: It really helped having each other for support. We put together a presentation and also produced a tri-fold leaflet. It was a fantastic opportunity to stand up in front of an audience of people from the rare disease community, ranging from genetic scientists to patients and their families. It was an incredible experience!

How has this competition changed your lives?

Nicole: It has really inspired me to find out more about how rare disease affects patients, not only the biology aspect also the social implications and how people can be marginalised. Taking part in the competition gave me more confidence and led me to focus on eugenics for my Year 12 project.

Hannah: On the day itself, we met some great people and made some really useful contacts for the future. I found myself having a conversation with someone from the Stem Cell Institute, which prompted the subject for my Year 12 research project about stem cell treatment and therapies for Type 1 Diabetes.

The RAREfest20 RAREsolutions poster competition is now LIVE!

RAREfest20 logo

RAREsolutions poster competition is part of RAREfest20, a vital, vibrant, virtual festival that champions the rare disease community, bringing together the brightest scientific minds, the most innovative tech, the medical pioneers and, of course, the patients, who are as unique as the festival itself.

Cancelled! Postponed! How do we roar for rare in the midst of a crisis?

Cancelled! Postponed! How do we roar for rare in the midst of a crisis?

Cancelled! Postponed! How do we roar for rare in the midst of a crisis?

Cambridge Rare Disease Network - Cancelled! Postponed! How do we roar for rare in the midst of a crisis? 2

At CRDN our focus is on raising awareness and building networks to address the unmet needs of those affected by rare disease and the professionals that work with them.  So how do organisations like ours maintain momentum during this extended period of lockdown?  

We create original and inspiring events, we collaborate with other engagement teams to drive rare disease onto mainstream  agendas to reach wider audiences, we attend and exhibit at others’ events and help promote these. The world of rare is used to operating in challenging circumstances but none more so than right now.

In recent days we have all found ourselves in the midst of a global pandemic with COVID-19,  a virus to which we have no immunity, having an unprecedented impact on health systems, businesses and on the way we live our lives, both locally and on a  global scale.

In order to slow the infection transmission rate and avoid overwhelming our health services, we are experiencing a seismic shift in our ability to travel freely with many parts of the world  imposing restrictions and bans.  As a direct result we are seeing large numbers of events being postponed and cancelled.  The impact on the rare disease community’s opportunities for sharing research and breakthroughs in drug development, for patients and their advocates to have a voice and for networking and collaborations to be made, cannot be underestimated.

 

vent ORGANISERS FEELING THE PINCH

In addition to the lost opportunities for sharing and networking, charities and organisations like ours, for whom events are their bread and butter, are just some of the many being hit hard by the huge financial burden of mass cancellations. Very few event organisers will have had insurance for communicable diseases and will be left to foot the bill for lost deposits and reimbursing speaker’s and attendee’s travel and accommodation costs. Of course the impact stretches way beyond the organisers with local communities also losing out to loss of footfall and many small businesses, from printers, designers, catering and AV hire to security firms, feeling the pinch.

At CRDN we have recently had the cancellation of the RCPCH Conference and exhibition 2020 where we were excited to be hosting a half-day symposium with fellow rare disease champions BPSU, Medics 4 Rare Diseases, Findacure and Rare Revolution Magazine. Dr Richard Lynn from the BPSU is disappointed but remains optimistic:

It is with great sadness that the first official collaborative event between our five organisations has been cancelled due to the COVID-19 pandemic. It is clear from the interest the event was generating along with the speed and willingness of speakers to sign up, that there is an appetite for such events aimed at paediatric trainees. Watch this space – the collaboration goes on.

Dr Richard Lynn, BPSU (British Paediatric Survelliance Unit)

Cambridge Rare Disease Network - Cancelled! Postponed! How do we roar for rare in the midst of a crisis? 3

Day-by-day we are being given new directives by the UK government, bracing ourselves for the next set of restrictions, trying to pre-empt and plan to best protect our delegates, employees and society as a whole. Factor in that we work within the rare disease community, a group that is classed as a high-risk and particularly vulnerable to the coronavirus, this is a hugely important time for us to review how we can continue to raise awareness and build networks whilst social distancing and self-isolation is being advocated and implemented to protect us.

IS THIS CRISIS THE CATALYST WE NEED TO DELIVER TRULY ACCESSIBLE EVENTS?

The rare disease community can find travel problematic at the best of times:  the expense incurred; the time it takes up;  difficulties with managing a condition and medication when travelling; issues with mobility and accessibility.  In a fair and accessible world we would be offering everyone an equally do-able pathway to take part in our event, whether in person on virtually.

Could this current crisis be the catalyst we needed to make events better for all and to reach a far wider audience than is physically able to attend?  Rather than traditional face-to-face conferences and classrooms for learning, will we hold more events via social media channels, live stream conferences and give those attending from home or work the technology to engage meaningfully?  Will MOOCs (Massive Open Online Courses) become even more popular  and online learning platforms replace the classroom?

At our last two summits we have made some inroads into engaging an audience outside of the lecture theatre by allowing people to attend via Glisser technology and take part in the Q+A. We even tried out No Isolation’s AV1 avatar allowing a parent advocate to attend from Scotland through a robot perched on stage. It all went swimmingly well until the robot began to heckle the speaker! There is certian appetite for change and this feels to us like an opportunity to do better for our patients and to be more flexible in our offerings.

THe Meaning of “grasp the nettle” in English

is to force yourself to be brave and do something that is difficult or unpleasant.

In most organisations and charities there is never enough time or resources to do everything we know we should do, so we prioritise.  Perhaps the current lockdown will provide some breathing space to refocus some of our awareness raising efforts and invest in those aspects of our work which we’ve been putting off?

Social distancing means people are spending more time in their homes with many feeling isolated and turning to digital platforms to keep in touch and stay informed. This could be a great time to invest in your digital marketing campaigns and raise awareness through these channels.

Online learning platforms

Findacure, a Cambridge-based rare disease charity are leading the way with their e-learning portal, a central hub of information and training for rare disease advocates and patient groups. Here they host educational materials including animated videos, webinars and written guides. Perhaps there is more we could all be doing to provide high quality educational experiences on online platforms?

 

Cambridge Rare Disease Network - Cancelled! Postponed! How do we roar for rare in the midst of a crisis? 4
Cambridge Rare Disease Network - Cancelled! Postponed! How do we roar for rare in the midst of a crisis? 5

virtual conferences the future?

In recent years there has been an increasing presence of virtual events and the COVID-19 health crisis has spurred a number of organisations to adapt and move their conference online rather than cancel.  Two brilliant examples are the EyeforPharma 3 day event which was due to take place in Barcelona last week and Eurordis’s ECRD event taking place mid May (check out our events calendar for registration details).  As rare disease teams are contemplating next steps, will they grasp this opportunity to look to the future and decide to move more events online to improve accessibility and reduce their financial risk?

 

In May, CRDN was due to run rare disease expert talks as part of the international  Pint of Science festival. This has been rearranged for early September, but if this proves impossible, perhaps we could move to Glisser Live,  an enterprise software service solution engaging with audiences, gathering data from live and virtual events and pushing out events live to mobile devices?

Other such as Eden Lord, Founder of My City Med and parent of a child with a rare condition, is already ahead of the crowd.  My City Med is an online health and medical site but they also run a growing and successful online event, Rare Fair, a truly inclusive event for the rare disease community which is entirely virtual and draws in rare patients, caregivers, advocates, non-profits, healthcare professionals, researchers and other stakeholders from around th world.  Eden also facilitates other non-profits to host their own virtual conferences through My City Med Events and we’ll be taking  a demo of the platform so as to be as prepared to take our own flagship event, RAREfest20, online on Nov 27 and 28th if needed. 

 

FUNDRAISING ONLINE

As well as cancelled events, charities are also feeling the pressure of missed opportunities to fundraise with events like the London Marathon cancelled. Virtual fundraising events such as online quizzes are gaining popularity with companies enabling charities and supporters to schedule fully hosted online events which can be played virtually from the comfort of peoples’ homes.

In these incredibly challenging times, it is important that we adapt to the changing environment protecting and looking after our rare community and that we continue to raise awareness and create stimulating  ways to stay connected, now more than ever.

Cambridge Rare Disease Network - Cancelled! Postponed! How do we roar for rare in the midst of a crisis? 6

Adam Pearson: Actor, TV presenter and campaigner speaking and exhibiting at #RAREFest18

Adam Pearson: Actor, TV presenter and campaigner speaking and exhibiting at #RAREFest18

Adam Pearson: Actor, TV presenter and campaigner speaking and exhibiting at #RAREFest18

Breaking news!! RAREfest18, which already had an amazing line-up, just got even better…

Adam Pearson and Dagmar Bennett in conversation will talk us through their collaboration to create this wonderful sculpture of Adam. Their talk will be part of the #RAREfest18 launch evening alongside other rare speakers, musicians and dancers. 

Adam Pearson is an Actor (most recently ‘Under the Skin’*), TV producer, Grierson Presenter of the Year Nominee 2016 and winner 2017, public speaker and campaigner against stigma towards people with a visible facial difference.

Adam has Neurofibromatosis Type 1, a rare genetic condition that causes excess body tissue to grow predominantly on his face.

The artist Dagmar Bennett created a hyper realistic sculpture of Adam, and through the tactile processes of this sculpture has allowed people to explore Adam’s personality and outlook on life.

Cambridge Rare Disease Network - Adam Pearson: Actor, TV presenter and campaigner speaking and exhibiting at #RAREFest18 7

 

 

Cambridge Rare Disease Network - Adam Pearson: Actor, TV presenter and campaigner speaking and exhibiting at #RAREFest18 8

Dagmar will be exhibiting her sculpture of Adam and discussing the process, purpose and impact of this work. She thrives on celebrating differences between people, making art to stimulate thought on the social norms presented to us every day. Her sculpture of Adam Pearson was created to help promote people with a disfigurement or disability being valued as equal. Her traditional sculpting methods in clay are entwined in a strong belief that skill and technique are especially important to an artist being able to portray ideas and concepts fully. Dagmar also believes that art can be a powerful tool to change perceptions; as Gunther von Hagens said – “The breaking of taboos sometimes is the price demanded by creativity.”

Meet Adam and Dagmar on Saturday 1 Dec at the RAREfest exhibition at the Guildhall 11am – 4pm. Tickets can be booked via this link: https://rarefest1dec2018.eventbrite.co.uk

After hearing his story, and developing a friendship with Adam I felt inspired by his positive attitude, bravery and determination to break down barriers regarding how people with a disfigurement are viewed and treated. In my portrait, I was determined to capture these qualities and show him as an individual.

Dagmar Bennett

Pharmphorum magazine writes about #RAREfest18 and the inspiration behind it

Pharmphorum magazine writes about #RAREfest18 and the inspiration behind it

Pharmphorum magazine writes about #RAREfest18 and the inspiration behind it

Cambridge Rare Disease Network - Pharmphorum magazine writes about #RAREfest18 and the inspiration behind it 9

This year, patients, clinicians, scientists and researchers will gather in Cambridge for a unique event: RAREfest18, a festival that aims to bring people together to improve the lives of those living with rare diseases.

September 20, 2018 – article in Pharmaphorum written by Richard Staines  https://pharmaphorum.com/views-analysis-patients/awareness-rare-diseases/

“A family tragedy has prompted Kay Parkinson, founder of the rare disease charity Alstrom Syndrome UK, to create a festival encouraging joined-up thinking to help improve treatments, care and services for people with rare diseases. pharmaphorum spoke to her ahead of RAREfest18 to find out more.

On November 30th and December 1st this year, patients, clinicians, scientists and researchers will gather in Cambridge for a unique event: RAREfest18, a festival that aims to bring people together to improve the lives of those living with rare diseases.

Although rare diseases are classed as something that affects less than one in 2,000 people, it’s not that uncommon to have a rare disease. Around one in 17 people are affected by a rare disease, and about 80% of the 6,000 – 8,000 known rare diseases are genetically derived.

That’s why Kay Parkinson, who lost two children to the ultra-rare disease Alstrom Syndrome, is trying to bring influencers together at RAREfest18 – as interactions between people from a range of different backgrounds could prove to be game-changing in the world of rare disease treatments.

In an interview with pharmaphorum, Parkinson gave an example from personal experience – when she was attending a rare disease conference she met the CEO of the Canadian pharma company Prometic.

This chance conversation resulted Prometic trialling its PBI-4050, also used in idiopathic pulmonary fibrosis and other diseases involving scarring, in Alstrom’s Syndrome.

Encouraging data from a UK-based open-label phase 2 trial of PBI-4050 in Alstrom’s Syndrome were presented at the International Liver Congress, and the European Association for the Study of the Liver, earlier this year.

There is now talk of expanding the trial to other countries, and in order to encourage this kind of lateral thinking, Parkinson launched the first RAREfest in 2015.

Parkinson said: “When I started a charity we were warned off pharma, but they turned into our greatest allies.”

The event has already attracted speakers including the late professor Stephen Hawking who had the rare disease amyotrophic lateral sclerosis, biotech entrepreneur Dr Andy Richards, and Dr Segolene Ayme, emeritus director of research at the French Institute of Health and Medical Research (INSERM).

The goal for Parkinson is to take people out of their “siloes” and thinking creatively, and to raise awareness about rare diseases among the general public.

She said: “Much of the information and summits are very siloed. You see the same people all the time. We wanted to reach the general public.”

“We felt that there was not a nucleus place for the pharma industry to show what it is achieving, and charities to show what they need.”

Improving awareness

While Parkinson is full of praise for the way pharma has supported rare disease patients, she says that there is a pressing need for more awareness amongst doctors

While specialisation in the medical profession can help with more common diseases, Parkinson says clinicians often struggle to look at patients in a holistic manner and fail to spot that a group of different symptoms are caused by a rare disease.

For example, Alstrom Syndrome is characterised by retinal degeneration, nystagmus (wobbly eyes), sensitivity to light, loss of hearing, obesity and insulin resistance.

But other features may include kidney and liver dysfunction, type 2 diabetes, fatty substances in the blood, poor cardiac function, and bladder and bowel problems.

Symptoms may develop at different stages and not everyone is affected by all of them, and even amongst siblings the symptoms can vary.

It would be easy for a clinician to treat any one of these symptoms – but to look at them together and make a correct diagnosis of Alstrom’s Syndrome is much more challenging.

This proved to be an issue while she was trying to get a diagnosis for her children, Matthew and Charlotte, who sadly died in their twenties as a result of the disease.

Parkinson said: “The individual components were diagnosed. They [clinicians] did not pick up heart disease, nobody put it all together. An eye specialist is not going to look at hearing loss. The whole thinking for rare disease needs to change.”

Patients with rare diseases are more likely to try and interact directly with pharma, or an expert in the field to try and find answers, she added.

“For rare diseases, you can’t pin your hopes on doctors, you pin your hopes on somebody developing something that’s not even there,” said Parkinson.

Rewriting the code

With so many rare diseases caused by faults in the genetic code, there is hope that technology like CRISPR offer the potential to treat the underlying cause of the disease, rewriting a patient’s genetic code to produce a cure.

There are already gene therapies on the market that use different techniques to overcome genetic diseases.

Parkinson hopes that these could lead to treatments for diseases such as Alstrom’s Syndrome but is realistic about the speed of progress.

“I hope it (CRISPR) may become an acceptable treatment. Costs will be involved, and a lot will depend on the funds going into it.”

“There will be lots of barriers to overcome. There are going to be great upsets before there are real breakthroughs. They don’t act like other diseases.”

“We have to remain hopeful as there are so few alternatives, I think huge challenges are still there as when you start intervening in humans it may take time to fully realise the implications.”

In the short term, Parkinson is hoping to drum up support, both financially and from increased awareness, for RAREfest.

While some of the events organised are based on arts and culture, Parkinson hopes they will foster an all-important dialogue between patients, doctors, pharma and wider society to help find new treatments or cures and improve care.

With organisations such as EURORDIS, the European umbrella group for a range of rare disease patient groups, and the Genetic Alliance working in a similar role at a national level in the UK, Parkinson is optimistic that progress will be made.

“Rare diseases are moving up the agenda, at least people are talking about them,” Parkinson said.

 

Findacure Cambridge Rare Disease Showcase

Findacure Cambridge Rare Disease Showcase

Findacure Cambridge Rare Disease Showcase

Findacure’s Annual Cambridge rare disease Showcase is back on 16th August.

Cambridge Rare Disease Network - Findacure Cambridge Rare Disease Showcase 10
Findacure are also looking for daring individuals to take on their infamous five-minute lightning talk challenge. If you have an exciting project to announce, a personal rare disease experience, or a unique approach to rare disease research, why not share it at their event? Calls for lightning talks are open until Friday 27th July and can be submitted during registration.

Tickets are available now by visiting www.findacure.org.uk/cambridge-showcase and attendance is free to patients, patient groups and charities.

Pint of Science Festival welcomes rare disease!

Pint of Science Festival welcomes rare disease!

Pint of Science Festival welcomes rare disease!

CRDN hosts a rare disease themed pub for the annual international pint of science festival…

Pint of Science is a non-profit organisation that brings some of the most brilliant scientists to your local pub to discuss their latest research and findings with you.

In 2012 Dr Michael Motskin and Dr Praveen Paul were two research scientists at Imperial College London. They began by organising 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 all involved.

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 3-day festival in Cambridge, London and Oxford.

Our events manager, Jo Balfour, co-hosted the Cambridge Neuroscience pub that first year in collaboration with Dr Hannah Critchlow, author of Ladybird Expert Series book, Consciousness.

Pint of Science quickly took off around the world and now happens in nearly 300 cities covering all manner of scientific topics.

We were delighted to be given the opportunity to host a rare disease themed pub in Cambridge during the festival!

The chance to host a pub, at an international festival with 19,500 twitter & 21,000 facebook followers, helped us put rare firmly on the menu

We hosted two evenings at Cambridge’s trendy drinking hole, Thirsty.  Both nights were sold out and we packed into their back room to hear about exciting research into rare disease taking place on our doorstep and personal stories of living with rare disease. Our speakers ranged from well know Cambridge rare disease expert Dr Lucy Raymond to emerging shining light, PhD student Patrick Short.  A huge thank you to all of their speakers for their fascinating talks, their personal stories and for getting involved in the fun.

For the full line up, speaker bios and talk synopses click on the links below.

Treasure Your Exceptions

Rare Disease: The Genomic Revolution, Searching for Cure for the 1 in 17

Cambridge Rare Disease Network - Pint of Science Festival welcomes rare disease! 13
Cambridge Rare Disease Network - Pint of Science Festival welcomes rare disease! 14

Wellcome Genome Campus Lecture and Tour

Wellcome Genome Campus Lecture and Tour

Wellcome Genome Campus Lecture and Tour

Summit Patient Journey poster creators and Unique Feet parents on tour at the Wellcome genome campus. 

As part of our #CRDN2017 summit, 33 rare disease patient groups and individuals created posters for exhibition and inclusion in a Patient Journey poster book. As a thank you and an opportunity to meet others and to continue to learn, the Cambridgeshire based Wellcome Genome Campus Engagement Team treated them and some of our Unique Feet group parents to a fascinating presentation, a guided tour and delicious lunch.

Dr Steve Scott from the Public Engagement Team delivered an interesting introductory talk about the history of and the pioneering work being undertaken at the Wellcome Genome Campus.  Following Prof Matthew Hurles treated the group to a fascinating and informative presentation and discussion about the DDD Deciphering Developmental Disorders project. 

The group were full of curiosity and questions and we wished we could have stayed all day! 

Cambridge Rare Disease Network - Wellcome Genome Campus Lecture and Tour 15
Cambridge Rare Disease Network - Wellcome Genome Campus Lecture and Tour 16
It was interesting to hear how they were re-looking at those not diagnosed the first time round and getting more results
Sue

Pitt Hopkins UK

Being a lay person I found the content easy to follow and definitely learned new information. 
Angela

Action Duchenne

Amazing! Really interesting and wish we had more time. It would be great for them to give us more understanding – why do genes go wrong? 
Sue

Unique Feet parent

What lessons were learnt from the DDD project?

Exome sequencing is cost effective for diagnosis now
Sequencing parents enables rapid, accurate interpretation
Sharing data across centres:
increases the accuracy of diagnosis
increases discovery of new genes
model for translational research in other disease areas
Informatics underpinning is essential
Up front capture of clinical information is critical
Expert-curated knowledge underpins clinical interpretation
Regular re-interpretation of undiagnosed patients
Barriers to translation into existing NHS genetics services

Cambridge Rare Disease Network - Wellcome Genome Campus Lecture and Tour 17
Cambridge Rare Disease Network - Wellcome Genome Campus Lecture and Tour 18
Cambridge Rare Disease Network - Wellcome Genome Campus Lecture and Tour 19

Rare Disease Day 2018 – CRDN/NIHR lecture event

Rare Disease Day 2018 – CRDN/NIHR lecture event

Rare Disease Day 2018 – CRDN/NIHR lecture event

CRDN and NIHR Cambridge Bioresource team collaborate to host a Cambridge rare disease day lecture event #ShowYourRare

Rare Disease Day takes place on the last day of February each year. The purpose is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on the lives of those affected.

Since its launch 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 substantial of media coverage. 

Following on from 2017, the theme for RDD is once again research. There has been great progress in rare disease research, often driven by effective collaborations between companies, researchers and patient advocacy groups.  Click here to find out more about the vital role patients play in the research process.

Together, CRDN and the Cambridge NIHR Bioresource team created a programme of short talks to showcase some of the ground-breaking research  being undertaken in Cambridge into a range of rare conditions.

 

The theme of rare disease day 2018 is research.
The best research translates findings into meaningful health outcomes and  involves patients  at all stages.

#showyourrare                   #whywedoresearch

 
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Snow didn’t stop play…

Despite the snow and chilly temperatures calling for a cosy evening in on the sofa, the rare disease community came out in force to celebrate Rare Disease Day 2018 at the Uni of Cambridge School of Clinical Medicine, William Harvey Lecture theatre.  Dr. Mike More, Chair of Cambridge University Hospitals, opened the evening for an exciting mix of attendees: those living with rare disease and their family members; young health professionals and students; clinicians; company and charity representatives working in related fields and the curious. Those gathered were treated to excellent presentations about current research from a wide range of speakers based on the Cambridge Biomedical campus and in the city. See the agenda opposite for info on speakers and their talks.

We used Glisser technology at the event to encourage the audience to get involved and engage with speakers by posing questions, responding to polls and sharing slides via social media. For the speaker responses to delegate questions please see here 

CRDN Summit 2017 – The Film

CRDN Summit 2017 – The Film

We collaborated with Lucia Tambini,  film maker producing films for charities including Oxfam, Tourettes Action, SeeAbility and Walk the Walk, to capture the essence of our annual summit in 2017 and what it is about our city of Cambridge which offers great opportunities to drive change in rare diseases.

The theme of CRDN2017 was ‘Re-imagining the Patient Journey’ and we worked hard to give patients and patient groups a platform and voice at the event through the Patient Journey Poster Exhibition and the Lightning Pitches element of the day.

For those who attended, take a look to see if you made it on film! For those who were unable to attend but are curious, watch the film and be inspired to attend this year’s RAREfest event – a weekend of celebration of everything rare on 30 Nov and 1 Dec 2018.

 

Watch the CRDN Summit Film 2017…

Cambridge Rare Disease Network - CRDN Summit 2017 - The Film 21

And the overall winner of our #CRDN2017 Patient Journey poster competition is…

And the overall winner of our #CRDN2017 Patient Journey poster competition is…

And the overall winner of our #CRDN2017 Patient Journey poster competition is…

Suzanne Morris of Cambridge and Lynn Laidlaw have collaborated, using Suzanne’s graphic design skills and wonderful artistic vision, to create a patient journey poster submission for the Cambridge Rare Disease Summit 2017 for the Vasculitis UK charity, Suzanne and Lynn both have has Behçet’s Disease and volunteer for the charity.

We are delighted to announce that the Vasculitis UK poster has been nominated as the best overall design for it is incredible creativity and impact.

Judges said “The novel way in which the journey was portrayed using the characters from Cluedo really cleverly draws you in and is extremely memorable. Congratulations to all of you for your contribution to this – you should be very proud!!”

To learn more about how the poster was conceived and it’s message read on here and view the full poster here.

Cambridge Rare Disease Network - And the overall winner of our #CRDN2017 Patient Journey poster competition is... 22

AKU Society on rare disease nursing

AKU Society on rare disease nursing

AKU Society on rare disease nursing

Cambridge Rare Disease Network - AKU Society on rare disease nursing 23
Nurse Specialists provide expert advice related to specific conditions, providing specialist advice and psychological support for both the patient and family.

Patients consistently rate their Nurse Specialist as higher than other health professionals in terms of both their honesty and of understanding their needs.

Read more at the AKU Society blog.

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