News

[Image description: Image shows a graphic with a pint of beer, on top of which is a brain wearing glasses. Next to the pint is text which reads 'Pint of Science']

18 April, 2019

Join us at this year’s Pint of Science!

We are delighted to be teaming up with Cambridge Rare Disease Network for this year's Pint of Science! Pint of Science is a worldwide science festival that aims to communicate scientific developments to the general public in an interesting, engaging and approaching way by bringing scientists right into their local pubs!

29 March, 2019 / Findacure News, Home Page

Become a trustee and support the rare disease community

We are recruiting new voluntary trustees to help us in our growth as a charity.

The Findacure Team - Rick, Mary Rose, and Libbie

29 March, 2019 / Findacure News, Home Page

We are hiring a new Fundraising Manager!

Findacure is looking to recruit a new Fundraising Manager to help us raise the crucial funds to support our patient empowerment programme.

15 March, 2019 / Rare Disease World

Registration for EB2020 now open!

28 February, 2019 / Findacure News

Student Voice Essay Winners Published!

We are pleased to announce that the winners of the 2018 Student Voice essay competition have now been published!

[Image description: A photograph of Findacure's Fundraising Manager Katie Cliss receiving a certificate from a representative of the Masonic Charitable Foundation

21 February, 2019 / Findacure News

Goodbye to Katie

It is with regret that we are announcing the departure of Katie Cliss from the Findacure team.

31 January, 2019 / Findacure News

Announcing our 2018 Student Voice winners

Find out about the winning entries in the Student Voice 2018 essay competition.

[Image description: Photo of the 2017-19 Empowerment Advisory Committee - from left to right are Claire Adams, David Bennett, Flóra Raffai, Deborah Mann, Jon Morton and Alan Thomas]

31 January, 2019

Become a Findacure advisor – join our Patient Engagement Committee!

We are delighted to announce applications for our Patient Engagement Committee are now open - this is your chance help shape Findacure's work in the future and transform the lives of rare disease patients.

30 January, 2019 / Findacure News

Take our patient group training survey!

Have your say on our patient group training programmes. What do you want to see from our future workshops? How...

[Image description: final programme for Drug Repurposing for Rare Diseases Conference]

16 January, 2019 / Findacure News

Programme announced for Drug Repurposing for Rare Diseases Conference

We are delighted to confirm the programme for our Drug Repurposing for Rare Diseases...

The Findacure team, Rick, Katie, Mary Rose and Libbie, at the Glasgow Rare Disease Showcase in 2018

15 January, 2019 / Findacure News

We are hiring a new Communications Officer!

Findacure is looking for an additional team member, as we seek to increase our impact on the rare disease community.

[Image description: A group of people holding certificates up and smiling at the camera.]

30 November, 2018 / Findacure News

Applications for our 2019 peer mentoring programme are open!

[Image description: Photograph of someone talking with their arms stretched as though emphasising how big something is.]

22 November, 2018 / Findacure News

New workshop! The everyday impact of rare diseases: supporting your patient community

Findacure is delighted to announce its first training workshop of 2019, which will focus on how patient groups can help...

[Image description: A photograph of six runners before they run the Cambridge Half Marathon. They are holding the blue Findacure banner and are all wearing blue Findacure vests. They are all smiling and wearing lots of layers as it is a grey day.]

12 November, 2018 / Findacure News

2019 Cambridge Half Marathon – Join Team Findacure!

Join team Findacure at the beautiful Cambridge Half Marathon on Sunday 3rd March 2019! We are thrilled to offer ten...

[Image description: Infographic showing details of the "translating rare science into treatments" workshop. The image reads: A Findacure #RareWorkshop. A day-long translational research workshop helping patient groups and academics drive research forward to deliver the treatments that patients need. Taking place on Wednesday 19th November in London. A Findacure event in partnership with LifeArc.]

31 October, 2018 / Findacure News

Programme announced for Transforming Rare Science into Treatments workshop

We are delighted to announce the full programme for our Transforming Rare Science into Treatments workshop

[Photograph of three men standing in a line facing the camera. The men are all smartly dressed in suits. They are each holding a sign which reads "I support Rare Disease Day Because...."]

17 October, 2018 / Findacure News

Announcing the Drug Repurposing for Rare Diseases Conference!

Findacure’s Drug Repurposing for Rare Diseases Conference is returning for its sixth consecutive year! Developing drugs for rare diseases is...

1 October, 2018 / Findacure News

The Student Voice 2018 – Essay competition launched!

Will you #DareToThinkRare and answer one of our three essay questions about the rare disease experience?

[Image Description: Programme for The Glasgow Rare Disease Showcase - click for more information]

17 September, 2018 / Findacure News

Programme announced for The Glasgow Rare Disease Showcase!

The programme for our Glasgow Rare Disease Showcase has been released! Taking place on Wednesday 10th October, our showcase will...

12 September, 2018 / Findacure News

New workshop! Transforming rare science into treatments.

We are delighted to announce our next workshop, on the topic of translational research. We'll be partnering up with medical...

[Image description: A photograph of hundreds of people dressed like Santa Clause and running.]

10 September, 2018 / Findacure News

London Santa Run 2018 – join Team Findacure!

Fancy a challenge? Join over 4,000 santa runners in the beautiful setting of Victoria Park, London, on Sunday 2nd December for a day of fantastic festive fun!

[Image description: A photograph of Mariam receiving her certificate from Emma Drane form Costello Medical Consulting at Findacure's 2018 conference]

31 August, 2018 / Findacure News

Support the Student Voice

Looking to raise awareness among medical professionals? Then Findacure and Medics 4 Rare Diseases have an opportunity for you.

[Image description: A copy of the programme for the Cambridge Rare Disease Showcase. The programme is available in plain text on the event page.]

2 August, 2018 / Findacure News

Programme announced for The Cambridge Rare Disease Showcase

Findacure is pleased to announce the lightning talk programme for our Cambridge Rare Disease Showcase! The evening will feature talks...

[Image description: Infographic showing details of the "Social Research - how to go about it" workshop. The image reads: A #KudosHealthEvent. Our speakers will offer advice and expertise on social research, including best practive and how to avoid common pitfalls. Taking place on Wednesday 19th September in London. A Kudos Health Event in collaboration with Findacure.]

30 July, 2018 / Findacure News

New workshop! Social research – how to go about it?

Findacure are teaming up with Kudos Health Research to deliver the next #KudosHealthDay on social research! Whether it be to...

[Image description: A graphical advertisement for the Medics 4 Rare Diseases Red Flags Survey. It reads ‘Calling all patient groups: Red Flags Survey’. The URL is http://bit.ly/M4RDredflags]

22 July, 2018 / Rare Disease World

M4RD launches ‘red flags’ survey for patient groups

Medics4RareDiseases are excited to announce the launch of their new research project: The M4RD Red Flags Survey. The purpose of...

[Image description: A photograph of two people stood up talking at a Findacure conference. Both people are smiling as though they are laughing with each other.]

19 July, 2018 / Findacure News

The Glasgow Rare Disease Showcase

Join Findacure for The Glasgow Rare Disease Showcase and celebrate rare disease projects in Scotland! This October, Findacure will head...

[Image description: A photograph of two people stood up talking at a Findacure workshop. They are smiling and using hand gestures.]

12 June, 2018 / Findacure News

The Cambridge Rare Disease Showcase

Findacure is delighted to announce the return of its annual Cambridge Rare Disease Showcase! Cambridge is a well-known hub of...

[Image description: A photograph of Findacure’s photographer Barbara Asboth. Barbara is holding her DSLR camera up to one eye, as though she is taking a photo. The other eye is looking directly at our camera. The photo is in black and white and is up to her face. She is smiling.]

2 March, 2018 / Rare Disease World

1 in 17 photography project

1 in 17 is an exciting new project, launched by Findacure’s go-to photographer Barbara Asboth, which focuses on the individuals...

[Image description: A photograph of the people involved in our 2016-2017 peer mentoring programme. 12 people are arranged in two lines and are looking at the camera and smiling. Most are holding certificates up for the camera to see. Behind them is a set of large wooden doors and wooden panelled walls. The wood has an intricate pattern. In both the top left and top right corners of the photo, you can see part of two framed portrait paintings.]

1 December, 2017 / Findacure News

Peer Mentoring Programme 2018

Are you looking to set up or grow an advocacy group for a rare disease? Or are you looking to...

[Image description: A photograph of people running in the Royal Parks Half Marathon 2017. The runners are running from the left to the right. It is a sunny day and they are running under the shade of trees on a path in Hyde Park. The runner in focus is wearing a blue Findacure vest, looking at the camera and smiling, with both hands waving in the air. Her shorts are black. There are spectators lining the other side of the running path.]

16 October, 2017 / Findacure News

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...

[Image description: A photograph of people sat in the conference room at Findacure’s 2017 conference. At the centre of the photograph is a person intently reading the schedule for the day. Besides and behind her are other people waiting for the conference to start. They are sat in a ‘theatre’ chair arrangement. The other people are chatting with each other or starting straight ahead.]

5 October, 2017 / Findacure News

Drug Repurposing for Rare Diseases Conference 2018

Findacure is pleased to announce our 2018 Drug Repurposing for Rare Diseases Conference! Taking place on Tuesday 27th February, at...

[Image description: A photograph of Findacure's essay competition winner being awarded a certificate at their annual conference. The winner and the award presenter are shaking hands, and the presenter is holding the certificate up to show to the camera. They are both smiling at the camera and wearing smart clothes. Behind them are white walls, a Findacure banner stand, and a big window.]

2 October, 2017 / Findacure News

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...

[Image description: A photograph of two people stood in conversation in the break-out room at Findacure’s 2017 conference. One person is facing the direction of the camera but is looking at the person opposite him, whose back is towards the camera. They are both wearing smart clothes and eating biscuits. There are other people in the room who have their backs to the camera and are out of focus. Behind them is a table, a Findacure balloon, a wooden wall, and a large window.]

18 July, 2017 / Findacure News

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...

[Image description: A 'selfie' photograph of the four members of the Findacure team: Flora, Rick, Libbie and Mary Rose. They are all smiling and looking at the camera. They have their hands up, almost in a 'jazz hands' motion. They are wearing casual clothes. The photograph was taken in their office.]

18 July, 2017 / Findacure News

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...

[Image description: A photograph of a large group of people at Findacure’s 2015 Cambridge Networking Event. There are around 30 people in the image. Most people are looking at the camera and smiling with their hands in the air. The photograph was taken inside with dim lighting.]

11 July, 2017 / Findacure News

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...

[Image description: A photograph of four people's legs, all wearing jeans. They are all holding one leg off the ground, with the foot pointed towards the camera. Behind them is a white wall, and they are stood on an mottled office-style carpet.]

8 June, 2017 / Findacure News

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...

[Image description: A photograph of Findacure's Executive Director, Flora Raffai. Flora is looking at the camera and smiling. She is holding up a sign which reads 'I love Findacure because they strengthen the voice of people affected by rare diseases'. She is smartly dressed and behind her background is a wooden wall.]

19 April, 2017 / Findacure News

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,...

24 March, 2017 / Findacure News

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...

[Image description: A photograph of three people standing around a table in friendly conversation at Findacure's 2016 conference. The three people are visible from the waist up and are wearing suit jackets and shirts. The table is tall and narrow, and it has a black table cloth and lots of mugs and glasses on top of it. Behind them is a blue Findacure banner stand and white walls.]

17 March, 2017

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...

3 March, 2017 / Findacure News

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...

[Image description: A photograph of the Healx office. Four people are sat at desks looking at computers. Two have the back of their heads towards the camera, and the other two are sat opposite them, facing the direction of the camera but not looking at it. A fifth person is stood at one of the screens and pointing at details on it. The person standing is Rick Thompson from Findacure and the four who are sat down are members of the Healx team.]

2 March, 2017 / Findacure News

Collaborating for cures: Announcing our partnership with Healx

We are delighted to announce the establishment of a close partnership with Healx to accelerate our drug repurposing for rare diseases project. Drug...

17 February, 2017 / Findacure News

Rare Repurposing Open Call

The rare repurposing open call is now closed to new submissions. We will updating the community about its progress in...

17 February, 2017 / Findacure News

Join our ‘Repurposing Open Call’ Thunderclap!

Rare Disease Day – Tuesday 28th February – will unite rare disease patients, carers, patient groups, researchers, academics and many...

[Image description: A photograph of two people in a tandem skydive. The parachute has already opened and is coloured a mixture of light and dark green. The photograph is taken from the ground and the gliders are high in the air. It is a sunny day. Behind them is a blue sky and a cloud.]

6 February, 2017 / Findacure News

Skydive for Findacure!

Hold onto your hats! After the great success of our 2016 Skydive, Findacure will once again see our bravest supporters...

[Image description: A photograph of people running in the Royal Parks Half Marathon 2016. The runners are running from the left to the right, and most of them are wearing charity branded vests. It is a sunny day and they are running under the shade of trees in Hyde Park. One of the runners is wearing a blue Findacure vest, is looking at the camera, and is punching the air with his hand raised above his head. His shorts are black, and he is wearing a cap and sunglasses. There are spectators stood behind barriers on the other side of the wide path.]

11 January, 2017 / Findacure News

Run the Royal Parks Half Marathon!

On Sunday 8th October, the streets of central London will be filled with people as they take on the 2017 Royal...

News

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