Join Findacure on Jeans for Genes Day

Half a million children in the UK are affected by a life-altering genetic disorder. Jeans for Genes Day is an annual fundraising campaign, organised by Genetic Disorders UK (GDUK), to raise awareness and money to transform their lives. This year’s event will take place on Friday 22nd September, and to achieve an even greater impact, GDUK are partnering with smaller genetic disorder charities like Findacure to help them spread the word, and in return, split the proceeds.

We would be delighted if your school or workplace would register to participate in this year’s Jeans for Genes Day in our name. All you have to do is sign up on the official GDUK page, choosing Findacure as your partner from the drop-down list, and encourage your pupils or colleagues to wear jeans on the day in exchange for a small personal donation. Extra fundraising initiatives, such as bake sales or quizzes, are more than welcome! Once you transfer the proceeds to GDUK, they will then transfer half to us for everyone we help to sign up.

The only exception is if you’ve taken part in Jeans for Genes Day in the last three years – in which case, we would still encourage you to take part, but all of the money raised will go to GDUK.

As hundreds of schools and workplaces take part each year, this is a great way for your pupils and colleagues to feel like an important part of the wider movement to end genetic disorders. For schools, it is also an opportunity for you to educate your students about the science of genetics, to promote equality of people affected by rare conditions, and to highlight the importance of charity and social responsibility. In return for your support, we would love to work with your school to develop a suitable activity to promote Jeans for Genes Day. This could take the form of a special assembly held by a member of our team, or a bespoke lesson or activity on the subject.

All of the money donated to us on Jeans for Genes Day will be used to help rare disease patients and advocates develop their own disease-specific charities, and to support and promote research into understudied rare genetic conditions. Raising the profile of these devastating conditions, and providing support for those affected, is of the utmost importance, and you and your team or school could help to make this happen.

Apply for your free fundraising pack to support Findacure and Genetic Disorders UK today!

If you have any questions about Findacure or Jeans for Genes Day, please don’t hesitate to get in touch with our Fundraising and Communications Officer on [email protected].

 

Saying goodbye to our Executive Director, Flóra Raffai

It is with a mix of sadness and gratitude that we announce the departure of our Executive Director, Flóra Raffai, from the Findacure team. Flóra started working as Project Manager in 2013, at which point she was the only Findacure team member. In late-2015, she took over the complete running of the charity after moving to the Executive Director position. Our Head of Research, Dr Rick Thompson, will be taking up the CEO role following Flóra’s departure on Friday, 12th May.

Flóra has built Findacure up to what it is today, and we can say with certainty that it wouldn’t have grown nearly so quickly without her dedication and hard work. Findacure is a flourishing non-profit and many of our projects, including training workshops, mentoring, and our online resources portal for patient groups and advocates, were initiated by her. Flóra will be sorely missed by the team, though she will still remain part of the rare diseases community through her role as trustee for the Cambridge Rare Diseases Network.

Dr Rick Thompson, who will be taking up the CEO role, is the second-longest serving team member behind Flóra, having joined in early 2015. He has been instrumental in leading Findacure’s scientific projects and developing the world’s first drug repurposing social impact bond. We have no doubts that he will excel as the CEO of Findacure, and that he will help the charity achieve even greater things in the rare diseases field.

To take the place as the fourth member of the team, we will be hiring a new Projects Officer. Applications are now closed for the position and interviews are being booked. Watch this space for more news!

We wish Flóra the best for her new role as CEO at Cam Sight, and the same for Rick in his new position as CEO at Findacure. If you would like to contact either Flóra or Rick, you can do so by emailing [email protected] or [email protected] respectively.

We’re hiring! Join our team as our new Projects Officer

If you’re searching for a varied and rewarding role, with plenty of responsibility, we have the job for you! We are recruiting a new Projects Officer to join our small, Cambridge-based team. Key details and how to apply are below…

Key Details

Job Title: Projects Officer
Location: Findacure Office, 66 Devonshire Road, Cambridge, CB1 2BL
Responsible to: CEO
Hours: Full-time (37.5 hours per week)
Salary: £20,000

Overview of the Role

As Projects Officer, you will be responsible for the management of projects across the charity’s departments. This will include working with Findacure’s beneficiaries to design projects that meet their needs, to plan budgets, manage projects, monitor progress, and evaluate and report impact. You will work closely with other members of the Findacure team to deliver projects that are best-fit and effective in achieving the charity’s aims.

We’re looking for someone who has experience in organising and managing projects, as well as a great team player. The successful candidate will be proactive, confident, an excellent communicator and organiser, who will relish this varied role, whilst being able to work under pressure and deal with competing priorities.

Click here to download the full job description and application details. Deadline for applications is midday on the 19th June.

The Cardiff Rare Disease Showcase

Findacure is pleased to announce The Cardiff Rare Disease Showcase!

Given the barriers that rare disease patients often face in getting the support and treatments they need, we believe that collaboration between all stakeholders is the only way the rare disease community can progress and meet its goals. To this end, we are holding our next Rare Disease Showcase event at the Life Sciences Hub in Cardiff, Wales on Thursday 4th May.

Our networking event will include cases studies from the ED Society and Tuberous Sclerosis researchers, alongside a selection of five minute lightning talks, proposed by delegates. The evening will be supplemented by canapés and refreshments to create an informal atmosphere and promote open conversation.

If you have any questions about the event, please email Mary Rose Roberts at [email protected] 

……

Tickets are available now on Eventbrite.

Registration is free for patients, patient groups and charities. 

Programme

  • 18:00 Registration
    ….
  • 18:30 Welcome and introduction to Findacure
    Dr Rick Thompson, Head of Research, Findacure
    …….
    From this point onwards, canapés and refreshments will be served.
    The event will consist of open networking accompanied by four delegate proposed lightning talks, each lasting five minutes, and two fifteen minute long invited case studies.
    ……
  • 19:00 The IMAGINE-ID study: parents as partners in research
    Dr Samuel Chawner, Research Associate, Cardiff University
    ….
  • 19:20 Case Study: Ectodermal Dysplasia Society
    Diana Perry, Chief Executive, ED Society
    ….
  • 19:50 Partnering for impact: charities helping charities
    Dr Madhu Madhusudhan, Senior Business Manager, MRC Technology
    ….
  • 19:55 I have a rare disease and I am crossing borders
    Alan Thomas, Founder, Atacsia a Fi – Ataxia & Me
    ….
  • 20:15 Case Study: Tuberous Sclerosis researchers
    Prof. Julian Sampson, Director, Division of Cancer & Genetics, Cardiff University
    ….
  • 20:45 NETs: a not so rare cancer?
    Nicola Jervis, Patient Support Manager, NET Patient Foundation
    ….
  • 21:00 Close

With thanks to our sponsor

 

The Student Voice - Winners published!

To mark Rare Disease Day 2017 our collaborators at Orphanet Journal of Rare Diseases published our three winning entries to our student essay competition, ‘The Student Voice’. We also presented all three of our winners with their certificates at our scientific conference on Tuesday.

 

Srinivasa Rambhatla, a student from the University of Birmingham, wrote the winning answer to our policy question – “How can clinicians and researchers, including students, help to deliver the UK Strategy for Rare Diseases?”. His essay, entitled “Implementing the UK Strategy for Rare Diseases more effectively: A patient perspective” used the experiences of an Alström Syndrome patient to highlight the relevance of the strategy to patients, and the ways that clinicians can implement it their benefit. You can read Srininvasa’s essay in this BMC ‘On Medicine’ blog.



 
 

Ferenc Gutai, from Dundee University, wrote the winning answer to our research question – “How can rare diseases lead the way in medical research and clinical innovation?”. His essay, entitled “The rare disease revolution: how it will help shape the future of medicine” gave a fantastic overview of the many different ways that rare disease research is at the cutting edge of science, whether at the forefront of next-generation sequencing diagnostics, promoting clinical innovation, or spearheading patient engagement. Ferenc’s essay is also available to read in the BMC’s ‘On Medicine’ blog.



 

Rebecca Nunn wrote the winning answer to our patient experience question – “The impact of a rare disease is much more widespread than its direct symptoms. Discuss how, with particular reference to the patient experience” – and was declared the competition’s overall winner. Her essay, entitled ““It’s not all in my head!” – The complex relationship between rare diseases and mental health problems” really impressed the judges with its excellent use of personal experience and independent evidence, all to highlight an often overlooked area of rare diseases – their impact on mental health. As our overall winner, Rebecca’s essay was published as an open access article in the Orphanet Journal of Rare Diseases, you can view it here, and download it to share with your friends and colleagues.

It was a pleasure to meet all of our winners at our conference. Congratulations on your success and we hope you recieve great feedback on your published pieces.

With thanks to our sponsors: