RAREfest22 – At the forefront of this event are the patients themselves!

Flutters and Strutters are proud media sponsors for this years RAREfest22 by Cambridge Rare Disease Network.

Cambridge Rare Disease Network are happy to bring back their RAREfest22 event, IN PERSON, 25th & 26th November

RAREfest22 is a public-facing, rare disease inspired festival with interactive exhibits, talks, film and art showcasing ground-breaking science, visionary technology and pioneering organisations, improving lives and bringing hope to those affected by rare conditions.

This years RAREFest22 launches with an evening of performance and arts on Friday 25th Nov and culminates in a day long event on Saturday 26th November. It is the world’s only rare disease-inspired festival attracting an audience of stakeholders alongside the public. Festival-goers listen to expert talks, watch films, interact with around 25 exhibits, hear powerful patient stories and mingle with those taking part and others attending.

Much to everyone’s delight RAREfest22 returns in person showcasing ground-breaking rare disease research and innovative lifechanging technology. At the forefront of this event are the patients themselves.

Owner of this image is the NCBRS Worldwide Foundation Created
20 Sept 2022

RAREfest22: Unique festival puts rare diseases into the spotlight! #RAREfest22

  • Did you know that 3.5 million people in the UK are living with rare conditions?
  • That’s around about the population of Wales. Hang on, didn’t we say RARE?!
  • Well, with over 10,000 different rare conditions, what may be individually rare becomes collectively common. In fact,1 in 17 of us may be affected in our lifetime so it’s something we should all be curious about.

With this in mind, CamRARE is making it their priority to push rare diseases into the spotlight.


We are proud to be media partners for this important event in the rare disease calendar.

‘Zebra Strutters’ is our Rare Disease Segment of the organisation and was originally added, in 2019/20 as an advocacy arm to ‘FibroFlutters’ our organisation for chronic illnesses since 2014. Earlier this year we made the decision to co-join them under the umbrella of Flutters and Strutters.

In our community

There are a number of our Facebook closed group community members with rare diseases, ultra rare diseases and undetermined conditions. Our co-founder, Vicky Green, has Pigmented Villonodular Synovitis (PVNS) and Hypermobility Ehler’s Danlos Syndrome. We have recently had another member of our closed Facebook community join with the same Ultra rare condition PVNS. There are also people with varying other conditions including Slipping Rib Syndrome, Palindromic Syndrome, and Ehler’s Danlos Syndrome. We also have members with Cowden’s Syndrome and Ataxia.


Alan Thomas who lives with Ataxia and one of our Trustees is Founder of Ataxia and Me


Of course within our global network, across social media channels, there are many people and families with many other rare diseases. It is important for us all to support one another and we all endeavour to do that. #StrongerTogether #StrutYourStripes

As an organisation supporting research and development of new therapies is very important as a whole, but more so for rare diseases. If people don’t participate in trials new drugs and therapies can’t be developed. Advocacy is essential.

Campaigning and advocating for multi-disciplined approaches to how our healthcare and conditions are managed is at the forefront of our desires. For both those with rare diseases, and those with multiple chronic conditions, and those who are classed as complex patients. Supporting the need for better education, improved patient engagement practices, easier methods of communication through written and spoken language are just as important.

Rare cancers

There are many people within our global network who are affected by rare cancers too. Families and patients racing against the clock to find treatments, clinical trials, early access programs and much needed support.

As a family we felt it at a personal level

Last year my mum’s husband, Arnold, was diagnosed with Mesothelioma an industrial disease caused by asbestos and it is a rare cancer. As a family and with friends and connections this news hit us all very hard. A disease with no cure, and very life limiting. Knowing what it feels like when someone you care deeply for is diagnosed with something like this makes you drive harder for better systems for rare diseases. Arnold was looked after, even given treatment choices and well supported throughout his difficult journey. He even got onto a trial for immunotherapy, but treatments were not easy, many problems ensued and in the end it didn’t really help. He then moved onto chemotherapy. He lost his battle in the Spring this year. The good ones always go early! But they’re never forgotten…


PVNS check this out – https://www.ouh.nhs.uk/patient-guide/leaflets/files/12241PPVNS.pdf


Not quite rare disease

Some of us, including myself, don’t have a rare disease per-se, but are classed as ‘rare’ to a point that we have rare anomalies and are classed as complex cases. In my instance I have a variety of musculoskeletal conditions that when when viewed as a group make me complex and rare. These conditions include Spina Bifida Occulta (SBO) and The Rare 6th Vertebrae (extra tailbone) combined with mild Scoliosis of the spine. SBO was once considered rare but isn’t anymore. However, when combined with the extra tailbone it is a rarity. I also have Benign Joint Hypermobility Syndrome aka Hypermobility Ehler’s Danlos Syndrome – yet to be verified as there isn’t a specific biomarker yet!

Genetics Mutations

Then there are those of us with rare genetic mutations who still have no idea what that means! Including myself!!

Earlier this year I was fortunate enough, thanks to ARCENSUS, to have my whole genome sequenced. It flagged up two mutations. MYH11 in relation to my Obstructive Defaecation Disorder and bowel related conditions, and TNFRSF13B which I was advised is a very rare mutation and related to autoimmune conditions. I am still trying to pursue further assessments and appointments to find out what these mean regarding chronic and rare diseases.


Special thanks to CEO & Founder of Arcensus Prof. Dr. Arndt Rolfs and Dr. Skrahina Volha, Senior Director Clinical Programs at Arcensus Diagnostics for their kindness, support and expertise. With their help my journey for answers continues.


Genomics, Whole Genome Sequencing, and genetic testing

Genomics, Whole Genome Sequencing, and genetic testing are crucial to anyone finding out about their rare! As an organisation we believe that genomics is the future for rare diseases in helping to pursue new medicines, personalised medicines, as well as faster diagnostics. Not just for us in the UK but across the Globe.

What our DNA holds can really help us to progress on our rare journey’s as grown up individuals, and even more so for parents, future parents and families where rare disease, could, or does affect their lives. Of course we support the need for Newborn Screening, but we also support those of us who get diagnosed as adults and also need help and guidance.

Mental Health

Living with chronic and rare conditions often comes hand in hand with mental health issues. Not just for the patients, but for family members and caregivers too. Flutters and Strutters have a mental health community on Facebook as we believe in having some kind of support available. We are not professionals, but we can point members in the right direction for them when needed.

David Ross, who has Cowden’s Syndrome, founded and co-runs a Mental Health group for men with rare disease, also for male caregivers. A place where men can feel comfortable to talk about their experiences. They have a zoom meeting once a month. David is also chief admin of our mental health community and helps out when health and time allow.

When time allows and my health allows I plan to set up a group similar to David’s… but for women!

Both David and myself can only do what we can do so it is not manned 24/7, but if someone reaches out then we do respond.

Why we’re proud!

The aforementioned is why we are proud to be media partners for RAREfest22, and also why we actively support Cambridge Rare Disease Network (CRDN) with monthly donations. We respect the diversity that Rare disease brings to us all. We also see the importance of the work that the CRDN does for families, children, and communities affected by rare disease. Rare disease communities are often tiny so sticking together is essential. The CRDN providing opportunities through events like RAREfest helps to bring the world of rare together for learning and fun.

Not long now!

Not long now until the event and I will be attending with my mum who will be experiencing it for the first time. Can’t wait to catch up with Jo Balfour (Managing Director at Cambridge Rare Disease Network (CRDN), Chris Chinn (Product Development Manager, Bioscientifica), and many others that I have met along the way and not seen, or even met yet in person. It is also a great place to meet new people too.

Wishing you all wellness from Flutter and Strutters

Carole Scrafton, Director, Co-Founder and Patient Advocate

Please come and join us. You can register via this link: https://www.eventbrite.co.uk/e/rarefest22-science-technology-community-arts-tickets-344157302757

Learn more about us as Flutters and Strutters: https://fluttersandstrutters.co.uk/about/

RAREfest22 puts those living with #RareDisease in the spotlight!
We’re proud to be media partners for this @camraredisease event which
includes talks by @GenomicsEngland @M4RareDiseases and
@singingscience. For free tickets https://bit.ly/rarefest22


RAREfest22 is a rare disease-inspired, unique festival that will spark curiosity, challenge perceptions, and showcase science and innovative tech while giving a voice to those living with rare conditions and their families. For the experts and the curious of all ages which promises a feast of expert speakers, immersive exhibits, films and art. A great opportunity to mix and mingle with the rare disease community, scientists, medical professionals, companies developing tech and treatments.

For any questions about RAREfest22 and their media partnerships please contact Lindsey Brown
lindsey@camraredisease.org
www.camraredisease.org

Cambridge Rare Disease Network’s festival will put the rare disease community centre stage, with inspirational talks including:


Image of a man called Rishi Nag, Singing Science - Genomics The Musical - a one-person show combining the basics of Genetics and the impacts on the rare disease community, the show provides an engaging way to familiarise yourself with key concepts – fit for all ages.

Rishi Nag, Singing Science – Genomics The Musical – a one-person show combining the basics of Genetics and the impacts on the rare disease community, the show provides an engaging way to familiarise yourself with key concepts – fit for all ages.


Lucy McKay, Medics4Rare Diseases - Rare Disease Podcast 4 Medics is broadcasting a live recording at RAREFest featuring guests from across the rare disease community. Expect an equally heart-wrenching and heart-warming experience.

Lucy McKay, Medics4Rare Diseases – Rare Disease Podcast 4 Medics is broadcasting a live recording at RAREFest featuring guests from across the rare disease community. Expect an equally heart-wrenching and heart-warming experience.


Other highlights at RAREfest22 include:

Illumina – The Cambridge DNA Journey – A visual map and timeline of the journey from the discovery of DNA to the development and application of genetics and genomics to diagnostics and healthcare in Cambridge.

Rare Youth Revolution – Join the RARE Youth Revolution for an immersive experience into the life of young people living with rare diseases and some invisible symptoms they experience. Talk to the team about internship opportunities for young people living with rare diseases.

Science, technology, arts & community – a window into the world of rare disease… for the experts & curious of all ages.

For FREE!!

Image showing patients with rare diseases speaking and doing activities at a previous RAREfest event.

Text included says:  Science, technology, arts & community - a window into the world of rare disease... for the experts & curious of all ages.  For FREE!!

Book tickets for you your family, friends & colleagues at www.camraredisease.org/rarefest22

The link attached to this image takes you to the Eventbrite event registration page
Owner of this image is the NCBRS Worldwide Foundation Created
20 Sept 2022

For more information visit: https://www.camraredisease.org/rarefest22/

Some of the exhibitors

Owned by Cambridge Rare Disease Network

Get your tickets here: https://www.eventbrite.co.uk/e/rarefest22-science-technology-community-arts-tickets-344157302757

Hope to see you there!

Non Profit for chronic (FibroFlutters) & rare illnesses (ZebraStrutters) Patient Advocacy Organisation

Reg. No. 14065901


logos and info banner header link to home page

Flutters and Strutters

FibroFlutters and ZebraStrutters

We are a Patient Advocacy Organisation & online social media communications network. Our services are for people affected by chronic illnesses and rare disease. This includes care providers, health professionals and those within the medical healthcare related industries. #notjustpatients

Advocating for a Multi-Disciplinary approach to all aspects of medical healthcare.

To help develop, nurture and help to create a multidisciplinary approach to all aspects of medical healthcare so that #chronicillness & #raredisease patients can receive the type of care and treatments that they need.

The work we do involves disease awareness, health awareness, and, helping to point people in the direction of where to get legitimate health communications and information. As well as this we attend events and use patient voice to get important messages to help create better systems and processes for patients.

Bridging the gap between stakeholders is a different type of awareness raising. It involves sharing events and campaigns by clinicians, pharmaceutical companies, patient led projects, healthcare providers… the list is quite variable. We have newsletters to ensue this which uses our slogan – #chronicillnessVOICE for everyone #notjustpatients



Follow us



SYNAPSE Powered by The Synergist.

The global Patient Engagement map and network
Find everything about patient engagement and make your content available to the community.



The UK’s First Network of Connected Community Maps by It’s A Doddle


Incorporated under the Companies Act 2006 as a private company, that the company is limited by guarantee, and the situation of its registered office is in England and WalesReg. No. 14065901

logos and info banner header link to home page

Flutters and Strutters

FibroFlutters and ZebraStrutters

We are a Patient Advocacy Organisation & online social media communications network. Our services are for people affected by chronic illnesses and rare disease. This includes care providers, health professionals and those within the medical healthcare related industries. #notjustpatients

Advocating for a Multi-Disciplinary approach to all aspects of medical healthcare.

To help develop, nurture and help to create a multidisciplinary approach to all aspects of medical healthcare so that #chronicillness & #raredisease patients can receive the type of care and treatments that they need.

The work we do involves disease awareness, health awareness, and, helping to point people in the direction of where to get legitimate health communications and information. As well as this we attend events and use patient voice to get important messages to help create better systems and processes for patients.

Bridging the gap between stakeholders is a different type of awareness raising. It involves sharing events and campaigns by clinicians, pharmaceutical companies, patient led projects, healthcare providers… the list is quite variable. We have newsletters to ensue this which uses our slogan – #chronicillnessVOICE for everyone #notjustpatients



Follow us



SYNAPSE Powered by The Synergist.

The global Patient Engagement map and network
Find everything about patient engagement and make your content available to the community.



The UK’s First Network of Connected Community Maps by It’s A Doddle


Incorporated under the Companies Act 2006 as a private company, that the company is limited by guarantee, and the situation of its registered office is in England and WalesReg. No. 14065901

Leave a Reply