It takes seven years on average for a person with a rare disease to get the right diagnosis. At Eastern Academic Health Science Network we are helping to deliver the latest NHS innovations to reduce this time and bring high-quality care faster to those who need it.
In supporting RAREfest 2018, the ‘first-of-its-kind’ rare disease-inspired festival in Cambridge, we helped to shine a light on innovations that aim to address the challenges. The Cambridge Rare Disease Network (CRDN) brought together stakeholders in the rare disease community and the region’s public to raise awareness of rare conditions and to showcase innovative solutions.
There were inspirational messages from people living with rare conditions, including speaker Michael McGrath, who was diagnosed with muscular dystrophy 30 years ago. He went on to become the first disabled person to lead expeditions to the North and South Poles and is the driving force behind his family’s charity, The Muscle Help Foundation.
CRDN founding member and Cambridge graduate Abbi Brown shared her experiences of living with the genetic bone condition osteogenesis imperfecta, while actor Adam Pearson, who has neurofibromatosis type 1, focused on breaking the taboos of living with a disfigurement. His bravery had inspired artist Dagmar Bennett to create a hyper-realistic sculpture of Adam, capturing his qualities and inviting people to explore his personality and outlook on life.
Innovative technology is key to assisting the discovery, diagnosis and treatment of rare diseases as well as building communities of support and improving services for those with rare conditions. It has the potential to vastly improve the lives of patients and to give the public a better understanding of conditions that are not well publicised.
Here at Eastern AHSN we have helped a local developer of an algorithm supporting the identification of rare diseases to access £500,000 of funding and are working on other key projects. One of those initiatives uses genetic association to understand the link between genes and diseases while another draws on machine learning techniques to associate diseases with an array of symptoms that may initially be overlooked in medical consultations.
If you have ideas on how to improve NHS services in our region, we want to hear from you. Please submit your suggestions via our new Health InnX East portal https://innovationexchangeeast.org/
The Guildhall, 2 Wheeler Street, Cambridge CB2 3QB
General Information
It’s 2018 and rare diseases are still not being consistently diagnosed, treated and supported effectively. Free to attend, this 2-day festival will shine a light on some successes and innovative solutions that are striving to address this. RAREfest will raise awareness of rare conditions and bring together all stakeholders in the rare disease community alongside the general public from across Cambridgeshire and beyond.
Speakers:
Alastair Kent, OBE FRSA Alastair was the executive director of Genetic Alliance UK (the UK alliance of over 200 patient support groups for patients and families with rare and genetic disorders) for almost 25 years. Abbi Brown Growing up with a rare disease isn’t always easy, but it does make for some great anecdotes. CRDN founding member and Cambridge graduate Abbi Brown tells some of her favourites.
Michael McGrath After being diagnosed with the muscle wasting disease Muscular Dystrophy (MD) aged 18 in 1984, Michael made history 20 years later by becoming the first disabled person to lead expeditions to the North and South Poles.
James Risdon James Risdon is a recorder player based in London. He has a rare eye condition, Leber’s Congenital Amaurosis, and learns all his repertoire from Braille. He is a member of the newly-formed Brewery Band who performed at the Edinburgh Fringe in August 2017.
Check the website for a full list of speakers and activities
The Cambridge Rare Disease Network’s RAREfest, a festival focusing on rare diseases, will bring together researchers, scientists, patients, and the public. It’s taking place on the 30th November and 1st December in Cambridge, England, and Patient Worthy talked to Jo Balfour, who’s involved in organising the event, to find out more about it.
RAREfest
The event, inspired by other local educational festivals, will involve talks, activities, and displays. These include a dance performance by Unique Feet, a group of ten children who each have a rare condition, and a talk by Michael McGrath, who made history as the first person with a disability to lead expeditions to the North and South Poles after being diagnosed with muscular dystrophy at age 18. “We hope that having quite a general science arts festival will encourage a wider audience”, Jo says, “but most importantly we want to help rare disease communities to come together.”
Bringing People Together
One of the most important features of an event like this, according to Jo, is that it brings people together. “People go away feeling really inspired.” Sometimes, these meetings can lead to collaborations, such as doctors and patients working together on projects, or finding new ways to work together to raise awareness.
“Putting the right people in front of each other, it doesn’t happen very often.” – Jo
Engaging Others
Another feature of the event that Jo says she’s particularly excited about is seeing a large variety of organisations get involved. Many companies that work in research and healthcare are participating, but so are other organisations. When Microsoft was approached for sponsorship, they agreed – and asked for an exhibition stand. The company has been working on a project called Torino that teaches children to code using physical objects. This method can be used by children who are visually impaired and blind, so it allows the whole class to learn together using the same technique. “It’s very inclusive,” Jo says. “It shows that anybody can get involved and support the rare disease community in some way.”
RAREfest is just one part of the Cambridge Rare Disease Network’s work, which also involves running local community groups, a companies forum, a rare disease nurse network, and other events. RAREfest is, Jo says, “a celebration of all the work we do, and helps us to show people what we do.” To find out more about RAREfest click here, and to learn more about the Cambridge Rare Disease Network and their great work, click here.
Anna is from England and recently finished her undergraduate degree. She has an interest in medicine and enjoys writing. In her spare time she likes to cook, hike, and hang out with cats.
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This is a brand new event run by Cambridge Rare Disease Network to try and broaden awareness and discussion around rare conditions, celebrate diversity, showcase research, medicine, science and technology…. and inclusive design!
Cambridge is actually our local city, and it’s amazing to find ourselves in the heart of one of the most active hubs of genetic research and hi-tech industry! In the past, CRDN have run rare disease conferences for the experts in the field, but this year it’s all about reaching a wider audience and bringing different perspectives together! From genetic researchers to rare people (like my J), from medical professionals to patients and families….!
And it’s a free event!
A launch evening on Friday 30th November and an all day festival on Saturday 1st December at the Guildhall in Cambridge (as it’s seated you do have to book tickets in advance for the Friday evening segment) and you can find out lots more info on the CRDN website here: #RAREfest
J and I are going to be involved in various different ways throughout the festival!
The first thing is that J* has become a #RAREambassador for the #RAREsolutions school’s competition, running parallel with the festival! The competition is open to all secondary and sixth form students throughout the UK to inspire the next generation of scientists, designers and engineers to think inclusive!
There are three challenges which require a design solution, and you can view them all and enter here (the closing date has been extended to 12pm Monday 15th November so there’s still time if you have an awesome idea to share!): #RAREsolutions
One of the challenges is set by us, and is based around an issue very close to our hearts, and that is, inclusive playground equipment (or lack of choice thereof!). This is our video (didn’t the kids did so well!?)…. https://youtu.be/Y1quMHkrwlg
The second thing is a performance on launch night!
This year J (well our whole family really!), have become members of Unique Feet, CRDN’s group for families of children with rare conditions. It’s been lovely to meet more children and families in our area, who are living with the challenges of rare disease, and we’ve enjoyed taking part in various fun inclusive activities, from horse riding to trampolining!
To help illustrate the amazing spectrum of diversity that makes up the rare community, the children have been working with Studio Wayne McGregor to create a dance performance that will form part of the launch night programme!
And finally, I’m going to be taking a stand at the festival on Saturday (1st December), as The Inclusive Home, to talk all things inclusive design and to highlight the need to be mindful of the social model of disability… particularly in the context of the (amazing, yet slightly scary) super speedy advances in genetic research!
Do come over and say hello if you can make it!
*(I refer to J & W by their middle initials most of the time because, other than me, all my family have first initial E and it gives her and her brother a little less searchability on the web – although of course I do tend to blow their cover from time to time!)
RAREfest, an event organised by the Cambridge Rare Disease Network (CRDN), will bring together patients, scientists, researchers, clinicians, support groups, businesses, and the public, to engage and educate people about rare diseases.
As part of this event, they are holding a RAREfilm competition that encourages people involved with rare disease communities to submit a short film of about five minutes, and the fifteen with the most votes will be screened at RAREfest weekend. The competition has had a huge response, with sixteen groups submitting films and more than 1,000 votes so far, with more time still left until the closing date. PatientWorthy chatted to Jo Balfour, one of the organisers, about the competition.
Raising Awareness
This film competition is an opportunity for groups to connect with a wider audience. Jo says, “every time we host an event we look for opportunities for other charities, particularly small ones, to get their message out.” By hosting a film competition, she hopes that these smaller organisations will be able to “raise awareness, reach a wider audience, and reach a different audience.”
Hosting a film competition also helps to give groups a structure to work with. Many of the people who submit films may have considered making one before, but been put off by their lack of experience. As Jo points out, for the people “who want to make one but don’t know where to start”, having a deadline, guidelines, and a platform to show it at, could give them “that extra boost” to do it.
CRDN’s Poster Competition
This film competition builds on a similar project by the CRDN last year, which encouraged patients and patient groups to create posters. The call for submissions had a great turnout, with patients submitting 52 posters. Jo says some of the posters “were scientific, others made a very impassioned plea for help, or presented a very honest view of what life is like as a family.”
After the competition, many of the posters continued to be used by people who brought them to conferences, where posters from researchers and doctors are common, but it’s less usual to see ones made by patients. There are more plans for the future, as well. Jo says that they’re hoping to raise funds to circulate a booklet of the posters more widely, including at GP surgeries and to every medical student at Cambridge University – “it’s about making rare diseases part of doctors’ education.”
A Range of Submissions
Compared to the posters, the film competition is open to a wider range of submissions, including from researchers, doctors, and scientists, as well as patients and patient groups. Jo says this is deliberate, many scientists are “hidden away in a lab somewhere doing amazing stuff”, and this film competition gives them an opportunity to share their work with more people. Jo says, “Last year we were trying to give the patient groups an opportunity to have a voice because we felt it had been stifled. This year, we are trying to give all the stakeholders a voice. It’s about celebrating successes, and that’s across the board.”
The films will be screened on 1st December at RAREfest, where people will be given headphones to listen with.
Anna is from England and recently finished her undergraduate degree. She has an interest in medicine and enjoys writing. In her spare time she likes to cook, hike, and hang out with cats.
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MHF proud to support #RAREfest18 by Cambridge Rare Disease Network spotlighting rare conditions - Muscle Help Foundation
Home » Latest News » MHF proud to support #RAREfest18 by Cambridge Rare Disease Network spotlighting rare conditions
MHF proud to support #RAREfest18 by Cambridge Rare Disease Network spotlighting rare conditions
Posted on October 10th, 2018
It’s 2018 and rare diseases are still not being consistently diagnosed, treated and supported effectively. Conceived by the Cambridge Rare Disease Network (CRDN), RAREfest18 takes place on 30 Nov & 1 Dec at The Guildhall in Cambridge. The aim is to spotlight some of the successes and innovative solutions that are striving to address this imbalance – the event is free to attend.
It is hoped that the festival will raise awareness of rare conditions and bring together many stakeholders from across the rare disease community alongside the general public from across Cambridgeshire and beyond.
Together with a number of other rare speakers, our CEO Michael McGrath will be speaking at the Guildhall on Fri 30 Nov about his own journey of diagnosis, his polar motivations and the precious commodity of life experiences.
The exhibition on Sat 1 Dec will showcase cutting edge research, science, technologies, products and solutions alongside best examples of medical services, support networks and powerful patient stories. The exhibition aims to demonstrate and celebrate the breadth of excellence in this field, in Cambridge and beyond.
The Muscle Help Foundation is delighted to announce that it will have a presence as an exhibitor and as such, we would like to encourage members of the public, supporters, donors, friends of the charity and organisations with an interest to come along and meet some of our Ambassadors, as well as some of our long-standing volunteers and our CEO to learn more about the charity’s work and impact but also hear some exciting news!
RAREsolutions Poster Competition (with a conscience)
In addition, we’re also thrilled to announce the support of one of our Ambassadors, Vivek Gohil, who has agreed to help the poster competition with a conscience take off!
Designed to educate, engage and empower:
It will break down myths about rare disease
It will teach you about science
You will meet RAREpeople
You will see how technology and engineering can make things possible
Check out Vivek’s RAREsolutions challenge film below:
The Muscle Help Foundation charity is proud to be supporting the Cambridge Rare Disease Network and RAREfest18.
A family tragedy has prompted Kay Parkinson, founder of the rare disease charity Alstrom Syndrome UK, to create a conference 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 conference 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.
“I was pleased to attend the conference with Allison in October 2017. It was very interesting. There were several people who did talks on their rare diseases. All small like us and are wanting to make awareness too. Met some interesting people. Going to these events helps people recognise us. Wearing our t shirts helped people know who and what we are.
Very enjoyable, nice meeting professionals, so informal and a good day. Thank you for organising this Allison.”
Dawn Gray
Read more about the summit and see how we got on displaying the r(20) patient journey poster…
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On the 23rd of October, Robinson College of the University of Cambridge hosted the 3rd annual CRDN summit.
The summit brought together patient groups, healthcare professionals, 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.
The meeting started with the keynote lecture by Dr Ségolène Aymé – the founder of Orphanet. Orphanet is one of the largest and oldest resources on rare diseases which has a goal to improve the diagnosis, care and treatment of patients with rare diseases. Its motto is: rare diseases are rare, but rare disease patients are numerous. In her talk, Dr Aymé gave an overview of the rare disease landscape, spoke about new technologies and tools available to patients, carers, and researchers, and shared several warnings. It is important to keep in mind that medical research focused on the patients’ diseases became driven by data, technologies and IT outputs, which means that the leadership switched from MDs and biologists to molecular and IT scientists. The main thing is, therefore, to remember that tools, algorithms and concepts from digital science and technology, valid for complicated mechanical systems, cannot address complex systems such as life. One has to remember that technologies are just instruments, and data collections are pre-competitive instruments. Ideally, a patient-centered approach to data collection and analysis should be adopted.
One of the most impressive parts of the program was patients presenting their posters. Each person was suggested to share three wishes with the audience, regarding the future care of people with their conditions. Becoming more visible, recognised and connected was a unanimous wish of the patients. In addition, many of them wished that health providers received specialised training in order to be up-to-date with rare disease research. Each rare disease patient basically becomes an expert in his/her condition and, unfortunately, often know more about it that their GPs.
A sense of community is extremely important for the survival of any group of people and it is not always easy to find in modern days. This is particularly difficult, and at the same time essential, for people with rare diseases. Knowing that there are other people with a similar condition, being able to connect and share, and hopefully, find a way to handle the problem, is of utmost importance and this goal was definitely achieved during the 3rd CRDN summit.
The Cambridge Rare Disease Network is a charity working to build a regional community of people in Cambridgeshire to address the unmet needs of rare disease patients, their families and the professionals who work with them.
Last month it was Canada, next week it’s Belgrade and yesterday it was Cambridge. OK, not quite as far away as the rest, but what an amazing setting for the Cambridge Rare Disease Network conference (CRDN).
I contacted the organisers a few months ago and asked if there was any way I could get involved. I explained that I wasn’t part of a patient support group nor a patient service, but that I would be representing myself and my two rare conditions: Acromegaly and Wyburn-Mason syndrome.
Whilst the programme had already been confirmed, I was more than welcome to attend and asked if I would produce two posters about my conditions, with a focus on:
Causes of the condition
Symptoms and Treatment
Impact of the Condition
Hopes and Aspirations for the future
And so, with a bit of advice and guidance from my friend David at Company-X (who helped design the book), I produced two posters. I was also made aware that there was a competition: to produce a Patient Journey poster and, in return, have five minutes on stage to talk to the conference about the patient journey and highlight three areas that should be focused on.
Over 40 posters were entered and only five were picked. And – lucky me – I was one of them.
Your patient journey poster particularly was nominated as the best patient journey story for its excellent quality of educational information and its impact. Your use of photos and images to illustrate the patient journey really cleverly draws you in to read more.
An Amazing Day
The conference itself was fantastic. There were experts talking about the science and genetics of rare diseases, the sharing of data, a rare disease search engine, drug repositioning and the role of pharmaceuticals, advocacy, awareness raising and more. It was particularly inspiring to meet individuals who now found themselves running a charity or being a spokesperson for a rare condition — simply because nature had decided that they or their loved one should befall a rare condition. It’s incredibly empowering to see this in action.
For myself, I had a great day. I managed to sell over 20 books, meet lots of people interested in my story, forged some great friendships and some exciting possibilities too. I’ve been to a few conferences and this was one of the warmest and best thought-out in a long time. Congratulations to everyone involved at the CRDN. See you next year!
Snippet of the poster in the Cambridge Rare Disease Network ‘Patient Journey’ poster booklet
in my heaEarlier in the year Cambridge Rare Disease Network put a call out for Patient Journey posters to be part of the 3rd Rare Disease Summit (#CRDN2017) in October. In the call out for poster designs, CRDN said “Journey maps go beyond the static medical view of a condition by illustrating the patient experience, promoting emotional responses and empathy and providing a visually compelling story of the patients’ journey.”
The theme for the summit is “Re-imagining the Patient Journey” and poster competition entries could be from patient groups, charities or individual patient’s – including those who didn’t have a formal diagnosis. The brief was to design an A0 poster that reflected the Patient Journey, using the 4 headings; Causes of the condition, Symptoms and treatment, Impact of the condition & Hopes and aspirations for the future.
As a graphic designer, and owner of a complex rare disease, I was drawn to the challenge of how to visually communicate Vasculitis from a patient’s perspective to an audience of medical professionals that would including pharma representation, clinicians, students and researchers, patient groups and other rare disease stakeholders.
Lynn the Vasculitis UK Helpline Support and Research Grant Administrator was keen to help me. When we started talking about the competition Lynn said that ‘the patients’ journey’ is becoming a buzz phrase within the NHS, and we both felt that creating a poster for the CRDN summit would be a great way to get the message out to multiple rare disease stakeholder about Vasculitis.
Lynn and I are both Behçet’s Disease patients and we were very keen to have Behçet’s and other rarer forms of Vasculitis featured on the poster. We both and the rare disease summit was the perfect place to get all of them some much-needed attention.
Over the summer we set about working out how to explain 6 rare disease patient journeys, with the added complication that no two Vasculitis patients have the same journey! While working on the poster Lynn referred to this as the “diagnostic odyssey” and this phrase stuck in my head. I then had the idea of borrowing the concept of a very well known board game and its set of characters… but, with a medical twist! and with a few new of our own creations including the “multi-factorial life dice”.
We were selected as 1 of the 5 short listed entries. All 5 of us were given the opportunity to have the poster projected onto the main screen in the auditorium and the chance to give a 5 minute to pitch to the audience. This pitch was presented from the patient journey perspective “…if you had 3 wishes what would they be?”.
As you can imagine, we were both delighted to be told that the Vasculitis UK Poster was selected as the overall winner. The Trustees of Cambridge Rare Disease Network said “Your poster was nominated as the best overall design for its incredible creativity and impact. The novel way in which the complex journey was portrayed really cleverly draws you in and is extremely memorable. Congratulations to all of you for your contribution to this – you should be very proud!!”. During the summit, Lynn and I had an overwhelmingly positive response to the poster and some very supportive comments about the 3 wishes that had been put forward in the 5-minute pitch.
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