Celebration and collaboration is the heart of this event!
Photo credit: A. Cotterill/GDUK
For organisations with a focus on genetic disorders the Genetic Disorders Leadership Symposium is the highlight of the events calendar.
This unique event brings together charity and advocacy groups of all shapes and sizes, whose one common goal is to support and raise awareness for genetic disorders, GDUK founder and CEO, Caroline Harding’s vision for a symposium is one where charity organisations can learn from each other. A spirit of collaboration and sharing of skills and innovation, that each group has fostered in their drive to improve the lives of the patients they support, has resulted in this superb event, now in its third year.
This year’s event was no exception with a mix of talks from both charity organisations and industry.
Nisha Taylor, Head of policy and public affairs at the Association of Medical Research Charities kicked off proceedings by out-lining the potential impact, both positive and negative, of Brexit on the rare disease community and spoke of what the AMRC are doing to ensure the concerns of their members are heard.
Educating the professionals
There were great examples of how to create consensus document by Claire Hennessey, Max Appeal and guidance for up-dating disorder guidelines and the provision of accredited training days from and Dr. Julia Vallortiga, Ataxia UK, both of which are vital in the fight to raise awareness and educate medical professionals on little known conditions
Scientific communities and the power of red wine.
Both Patricia Osborne, Brittle Bone Society and David Hartley XLP Research Trust shared their strategies and tactics for hosting successful scientific symposiums, with building a community and red wine coming up high on their list of ‘how to entice researchers to attend!’
Inclusive Skating founder, Margarita Sweeney-Baird gave an impassioned speech on the lack of ‘inclusion’ for people with genetic disorders in sport and talked about how through her work, she has established the Special Olympics figure skating programme and is hosting the first ever Inclusive Skating for Genes British Championship to be held in Glasgow from the 11th – 14th April.
Making the most of media and achieving positive PR
Cause Communications and Just-Giving gave great advice for making the most of your campaign in the press and maximising your fund-raising pages, whilst here at Rare Revolution we spoke of the importance of providing a ‘safe’ platform for patients and charities, and announced our Rare Revolution Kids edition due for launch in October.
Photo credit A. Cotterill/GDUK
Rebecca Stewart - Rare Revolution Magazine
Kay Parkinson, Cambridge Rare Disease Network, told the patient journey of her own two children, who after years of misdiagnosis lost their lives, as a result of Alstrom Syndrome, aged 25 and 29. Kay’s unwavering determination has led to a drug trial for improving organ fibrosis in patients with Alstrom and makes her a driving force for change.
Research fellow at the Wingate Institute for Neurogastroenterology, Lisa Jamieson’s personal account of how her spontaneous cerebrospinal fluid leak and subsequent diagnosis of hypermobile Ehlers-Danlos syndrome, and a lack of published information, led to her own research, in the effects of diet and nutrition on patients with Ehlers-Danlos syndrome.
There were many other insightful and inspirational presentations throughout the day from charitable organisations, industry and research professionals giving attending delegates much to learn and take back to their own organisations.
From the networking dinner on the Friday evening through to afternoon tea at close of conference on the Saturday, Caroline and her team at Genetic Disorders UK have thought of everything to ensure their Leadership Symposium delivers in both content, and delegate experience, making it a stand out event.
Here at Rare Revolution we are already looking forward to GDUK 2018.
You can read more about this event including details of their first Champions of Hope awards in our Spring Edition out soon.
To subscribe to our free digital magazine for articles and news of interest SUBSCRIBE HERE
Photo credit: #ToyLikeMe, Photographed by Beth Moseley
Here at Rare Revolution Magazine, giving patients access to information and a place to have their voice heard is at the core of what we do.
As our third edition is just over a month away from hitting inboxes around the world we have been overwhelmed by your responses and support and astounded at the number of people and organisations who want to be heard.
We love Rare Innovation and when Richard Lynn of the BPSU planted a seed when he met our Co-Founder Rebecca Stewart at the Cambridge Rare Disease Network in October we couldn’t ignore it, and we have since teamed up with the Rare Together Initiative of the British Paediatrics Surveillance Unit (BPSU) and Birmingham Children’s Hospital, Rare Disease Unit to push the boundaries of information innovation.
We are opening up our magazine and letting the children take over once a year to produce an accessible, informative and engaging rare disease publication created specifically for children – by children!
With a mix of professional and peer content we will enlist the help of a team of Rare Children to work with us on this special publication. From assistant editor, columnist, blogger, journalist, video content and photographer we want this to be a truly kid centric affair.
Ahead of our official Launch on the 25th February at The Birmingham Children’s Hospital Marvellous Superstar’s Rare Disease Party we are inviting interested parties to view our sponsorship proposal and give them an opportunity to be involved in this ground-breaking project from the outset.
Join our #rarerevolution and support us to support RARE children!
For more information contact Rebecca at firstname.lastname@example.org
Through the work of our charity and through this magazine we are very blessed that our lives entwine with that of many families. Sometime its fleeting support, sometimes is long and lasting relationships.
But my frustration never gets less when I hear of the excruciating battles some families face in the quest for a diagnosis.
What we must remember, and what the clinical, patient facing world especially must remember is that undiagnosed is just that. A point in time when the answers are unknown and even the right questions aren’t yet being asked. Please do not let this window of time, be when families fall through the net and into despair.
To hear today that a child feels that he isn’t believed is a wake-up call to all!
It is not the job of a child to portray him or herself in a manner as to convince others on the `realness` of their rare condition, or feel the burden when they fail to see tests yield results.
For the sake of every child in this undiagnosed limbo we must make sure that it is remembered, that just because it doesn’t `fit` doesn’t mean it doesn’t exist, it just means the grown-ups need to work harder to ask the right questions, run the right tests and find the right science to get the right answers.
Our Winter Issue is out – but no time to sit back on our laurels here at Rare Revolution, as planning is well underway for our next issue in March!
To say we are excited about this issue would be an understatement, as we are going to do something very special and innovative – let me explain
Our March issue will focus on RARE Responsibility – more specifically the role that the corporate world plays in this. With so few companies choosing to support RARE under their social and corporate responsibility, we want to change this, and of course we want to shout about those who ARE choosing rare!
Our issue will spotlight the following:
If you want to be included in our special `pitch it` section, just email us now email@example.com we will email you details on how to get involved.
Join the #RareRevolution
When the time comes for companies to choose their charitable beneficiaries for the coming term, we know only too well in the rare disease community that maximising publicity is often on their minds.
When I recently asked a large power supplier if they ever considered working with smaller charities for their, three year charity commitment, they said "no, we only ever consider from the big charity groups". When I asked why they were quite clear - maximised publicity!
Although I understand this, it did get us thinking. From an investment point of view, small charities make better financial sense. With little or no overhead costs, and often run passionately by unpaid volunteers your money can go a lot further and significantly affect the lives of the people these charities support.
This is a topic we are going to cover in much more detail in the Spring edition of Rare Revolution Magazine - RARE Corporate Responsibility - Why choose Rare, but until then I thought I would share with you a great way your company can make a great investment and directly help children.
Did you know if your company sponsors one of Teddington Trust's Little Ted goes to school... primary education resources your can nominate the school that receives it?
This cross-curricular pack delivers key messages in inclusion, genetics, rare diseases and sun safety. Don't think this is relevant in schools? 1 in 17 people live with a rare disease and 50% are under 12. Seven people a day die in the UK from skin cancer and it is the fastest growing cancer in the 15 to 35 year age bracket.
PLUS every funded school pack allows Teddington Trust to send their BMA award winning patient education Little Ted pack to a child living with the rare genetic disorder Xeroderma Pigmentosum*.
So let's just take that all in for a minute...
For a company investment of £150 you can help educate an entire primary or early years education setting on a range of health and well-being, science and social topics AND help a young child learn about and how to manage their own complex rare disease!
This could be the best company investment you have made all year!
Visit www.teddingtontust.com/bearsforrare for more information
or email firstname.lastname@example.org
I have not long finished a Skype interview, for our Dec issue, and as always, it was an absolute honour.
We feel very privileged to be in a trusted position, where families can approach us about sharing their own unique RARE story. To sit and listen, to a mix of common shared struggles and unique emotional and physical challenges, is a privilege we don’t take lightly.
We look forward to putting a lot of love and commitment into turning this interview into a feature for our ULTRA RARE edition.
To quote the words of a song, which aptly reflect our vision of RARE Revolution Magazine:
“You be the book, I`ll be the binding,
You be the words, I`ll be the rhyming”
Extract "That's Whats Up" Alex Ebert
Photo credit Copyright Nicola Miller 2016
Jennie is a married mum of three and writer of @LittleLifeofMine. She also happens to be part of the RARE community and lives with several chronic conditions, including EDS Hypermobility type, Postural Orthostatic Tachycardia Syndrome, Gastroparesis and Inflammatory Bowel Disease. We featured her voice in our Autumn Issue, Patient Voice, (refer My Time page 48), and we are thrilled that she has agreed to join us as a guest columnist for Rare Revolution Magazine, where she will become a regular voice, bringing her own brand of passion, humour, sarcasm and emotion.
“I seem to get a new diagnosis almost every few months! I do my best to enjoy life and stay upbeat, but it can be hard as I'm generally in pain and exhausted. When I was told I wouldn't work again that was a huge blow. Becoming disabled not only took away my health, I felt it muted my voice. I had no standing in the world. So I began my blog. I wanted to share my experiences and my thoughts and feelings on issues pertinent to the disabled community. Issues close to my heart. I'm really surprised and humbled by how far it's come, and how many people have told me they're helped and encouraged by my writing.
The only way I can write is from the heart, so that's what I will be doing in my new column within Rare Revolution. I'm really looking forward to sharing my work, and hope you all enjoy reading it.” Jennie Patterson
On the eve of our big launch, we are in a reflective mood; looking back over the last few months to get us to this point, is emotional.
The stories that have been shared with us in writing and over the phone have been truly moving, as are the feats achieved by the RARE community whether they be directly or indirectly affected by a rare disease.
One thing is clear, there is a strong desire to be heard and represented!
Our vision is simple, and its one of a #RareRevolution - "To bring about a dramatic and wide reaching change in conditions and attitudes"
When Michael McGrath, (named as one of Britain's most influential disabled people, Power 100, 2016), says this about the launch edition you can't help but feel proud!
“In helping to raise real and hopefully lasting awareness of RARE diseases, this special launch edition of Rare Revolution Magazine is not only packed with information but its story-telling style is engaging, informative and inspirational. To be featured is an honour. Providing a platform that not only gives hope but also stimulates interest and broadens knowledge is refreshing. I am proud to be part of this growing community of RARE advocates that not only care but also want to champion change – bring on the #RareRevolution!”
To read about Michael in our RARE Inspiration interview, make sure you receive your free digital copy tomorrow.
Subscribe at: www.rarerevolutionmagazine.com
Come with us, and join our #RareRevolution and let's just see what can be created together.
Nicola Miller & Rebecca Stewart
for RARE Revolution Magazine
A poignant blog - but what are your experiences?
How do you cope with misguided or unwanted attention?
Have you developed some quick `go to` strategies to cope with these kind of situations?
Accessing education at any level from nursery to further education is a complex minefield to navigate when you live with a rare condition. There is finding the right placement, statutory statements and care plans, funding streams, personal assistance, risk assessments, adaptations, specialist equipment, staff training, peer engagement, social worker engagement and `reviews`... and that's all before the student sets foot through the door.
Some schools get it right almost all of the time, some just about get by and others can fail disastrously leaving parents overwrought and children trapped with limited opportunity and feeling isolated.
Then there are those who fall through the net due to being in that undiganosed limbo, and in some cases are entirely unable to access appropriate education.
What are the biggest challenges facing parents and young adults today in the journey through specialised or mainstream education?
We would love to hear your RARE Education story x