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

 

Early bird tickets are on sale until Monday 11th September. 

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.


 

Sponsorship opportunities are available for this event. If you would like more information, please contact [email protected].

Supported by

With thanks to our sponsors

 

Bronze

Our sponsors have provided financial support for this event. This event has been solely organised by Findacure and our sponsors 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.

The Cambridge Rare Disease Showcase

We are excited to announce The Cambridge Rare Disease Showcase!

At Findacure, we believe that collaboration is key to making advancements in the rare disease community. To this end, we are inviting all stakeholders in the field to come together and share in the progress being made in the Cambridge area.

The showcase will take place on 24th August, from 19:00 to 21:00 at Baroosh, Cambridge, and will highlight various rare disease projects taking place, with emphasis on those with links in Cambridgeshire and nearby areas.

Alongside networking, the evening will feature lightning talks proposed by delegates. Canapés and refreshments will be available to create an informal atmosphere and promote open conversation.

Anyone with an interest in rare diseases is welcome to attend.

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

Tickets are available now on Eventbrite.

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.