Cambridge Half Marathon 2018

Fancy a challenge? Be one of the 9000 people to fill the streets of Cambridge on Sunday 4th March in the 2018 Cambridge Half Marathon. The 13.1 mile run will explore the beautiful and historic city of Cambridge and we have a golden opportunity for you to take part!

Findacure are pleased to announce that we have places available for 10 lucky runners! All we ask for is a £25 registration fee to secure your place and a suggested fundraising target of £300. General individual entries are nearly sold out and also come at a higher price than our registration fee, so don’t wait to grab your place with Team Findacure! As an extra incentive, we are excited to offer one of our running vests for free to every fantastic runner who joins our team.

Want to be a part of Findacure’s 2018 Cambridge Half Marathon team? Get in touch with our Fundraising Officer, Katie at [email protected].

Why run for Findacure?

We would love for you to be part of Team Findacure! We are a small charity based in Cambridge, and really value all the hard work and effort our fundraisers put in. Every pound really does make a difference to the work we do in the rare disease community.

Although 3.5 million people in the UK live with a rare disease, many face isolation and have little hope for a treatment. Only half of the 7000 rare diseases have a patient support group set up in the UK, and only 400 of them have a licensed treatment. Because patient populations are so small, there is very little incentive or funding for researching them.

Findacure is a fantastic charity that is building the rare disease community by helping patient support groups to establish or grow. We have also launched our own non-profit drug repurposing project, which aims to bring treatments to patients much faster and cheaper than novel drug discovery. This is in the hope that fewer patients have to face the isolation, devastation and pain that rare diseases all too often inflict.

The Student Voice 2017

Do you want to be a published scientist?

You can be, with the return of Findacure’s essay competition, The Student Voice! As if that wasn’t enough entrants also have the chance to win a cash prize of up to £200, and attend our scientific conference.

There are over 7,000 rare diseases which affect an estimated 350 million people worldwide. Despite this, only 400 have licenced treatments and medical students receive little training in their diversity and care. Back for a fourth year, “The Student Voice” aims to raise awareness of rare diseases among the doctors and researchers of tomorrow, as well as giving an outlet for their experiences and thoughts on all things rare.

Thanks to our partnership with the Orphanet Journal of Rare Diseases (OJRD), our competition has really grown over the last two years. Our overall winners have had their essays published as papers, and many of the best pieces have appeared as blogs on the BMC website. Last year’s winners can still be seen on the OJRD rare disease day page, and you can learn more about all of our past winners on our general essay competition page here.

Our partnership with OJRD continues for this fourth instalment of the competition, meaning that once again our overall winner will have the chance to be published free of charge in this open access, peer-reviewed scientific publication. We are opening up the competition further still by promoting it to an international audience.

This year’s competition will also have an increased focus on patients’ and students’ experiences of rare conditions. Do you live with a rare disease yourself? Have you treated a patient with a rare disease, or conducted research into their underlying causes? Do you know of or work with a rare disease patient group? If so, this competition is for you.

If you are a medical student, biology undergraduate or masters student, or studying for a health-related undergraduate or masters degree, all you have to do to see your name in print is write a compelling 1,500 word essay on one of these three topics:

1. Rare disease patients often experience a ‘diagnostic odyssey’, moving from clinician to clinician, with multiple misdiagnoses and unnecessary tests. Discuss the impact of this experience on the patient and patient-clinician relationships and, along with examples, ideas on how this experience can be improved.

2. With reference to specific rare diseases, case studies or personal experience, discuss the barriers preventing patients from accessing treatment, and how medics and researchers can improve access to treatments and trials in the future.

3. How can more medical students and researchers become involved in rare conditions? What challenges will they need to overcome to be successful?

An expert panel of scientists, clinicians and patient groups drawn from Findacure’s extensive rare disease network will judge the essays, along with the editor of OJRD.

The winning entry for each question will receive a cash prize of £100, as well as the opportunity to attend our Rare Disease Day conference on 27th February 2018. Here they will receive their prize and meet key clinicians, researchers, patients, and pharmaceutical companies from the rare disease field.

One essay will be declared the overall winner and will receive an additional £100 as well as having their essay published in the Orphanet Journal of Rare Diseases!

Entry forms and essays must be submitted by 9.00am on Monday 13th November and emailed to Rick Thompson ([email protected]). The entry form and rules and regulations can be found at the links below.

For more information email [email protected].

Download Essay Competition Materials

Rules and Regulations

Entry Form

Essay topics

Advert – published scientist

Advert – Rare disease story

Patient Experience Open Call

Speak at our annual conference! 

 
On 27th February 2018, Findacure will be holding it’s fifth annual conference on drug repurposing for rare diseases. Following the success of last year, we are very pleased to repeat our Patient Experience Open Call for one of our conference’s main speaking slots. The event will be hosted at the Royal College of Nursing, in London.

We are seeking a rare disease patient and/or patient family member to share their experience of living with a rare disease, and their experience of clinical research linked to drug repurposing.

The speaker(s) will have a twenty five minute slot to speak to our mixed audience of rare disease stakeholders, including patients, patient groups, researchers, clinicians and industry representatives. Speakers will also be invited to join our panel session later in the day. This is a great opportunity to share your story and experience with the rare disease world.

If you are interested, please fill out our online application form by 10:00am Monday 6th November.

Shortlisted candidates will be contacted by the following Friday. If you have any questions,
please contact [email protected].

Tickets for our 2018 conference will go on sale in late October. 

The Newcastle Rare Disease Showcase

Join Findacure for The Newcastle Rare Disease Showcase, a day-long event to celebrate and highlight rare disease projects taking place in Newcastle and the North East England.

By providing a friendly forum for patient groups, researchers, clinicians and life science professionals to come together, we hope to encourage collaborations within the rare disease community to improve the future of rare disease science and healthcare.

The showcase will take place on Tuesday 31st October, from 10:00 to 16:30 at the Centre for Life, Newcastle. The day will:

  • introduce Findacure and its work
  • provide a forum to share and celebrate rare disease projects taking place in Newcastle and the North East
  • showcase Newcastle as a European hub for rare disease research
  • feature talks highlighting progress in rare bone disorders, neuromuscular disorders and rare skin cancer
  • include an afternoon networking session with lightning talks proposed by delegates
  • allow networking between all major rare disease stakeholders

 

Tickets are on sale now!


Registration is free for patients, patient groups and charities.

If you are interested in presenting one of the five minute lightning talks, please express your interest during registration, where you can submit a short talk proposal. We will be in touch with those selected in early October.

With thanks to our sponsors

 

Gold

Bronze

Supported by

Our sponsors and supporters have provided financial support for this event. This event has been solely organised by Findacure and neither our sponsors nor supporters have not determined the content.

We’re hiring a new Fundraising 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 Fundraising Officer to join our small, Cambridge-based team. Key details and how to apply are below…

Key Details

Job Title: Fundraising 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 the Fundraising Officer, you will support the CEO in maximising revenue for Findacure from all income streams. The primary focus will be on sourcing corporate grants and sponsorship, and developing our offering for corporate social responsibility, though grant applications will be another key component. You will be set clear fundraising targets, and meet these through effective administration of our applications and identification of new funding opportunities. You will be involved in forming and maintaining relationships with our supporters, monitoring and reporting on the success of projects, and developing a new high net-worth funding strategy. The Fundraising Officer will also plan, manage, and deliver Findacure’s community fundraising efforts in collaboration with the wider team. This will focus on challenge events, but is open to development by the successful candidate.

We’re looking for someone who is 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 8th August.