Blog

We produce a weekly blog to share what we’ve been up to, stories from the rare disease world, interesting info on our projects, and more.

Every week we put our fingertips to keyboards to bring you, our community, stories of what we’ve been up to, things we’ve found interesting, and updates from our projects. Released every Friday, our blog is also regularly written by guests who openly share their experiences. We hope you enjoy reading our little instalments!

If you would like to share your own story on our blog, please contact Taryn, our Communications Officer: [email protected]

Danny’s fortnight at Findacure

by Guest | Aug 19, 2019 | Meet the team

In this week’s blog, we would like to introduce you to our new volunteer, Danny de Vries Robbe. Danny joined us from Royal Holloway University London for a two-week placement which focused on the development of e-learning materials for our portal.

Seven years in the making: SONIA 2 and DevelopAKUre results analysed and positive trends identified!

by Taryn Challender | Aug 2, 2019 | Rare disease world

Findacure would like to congratulate our co-founder Nick Sireau and office mates the AKU Society on the news that analysis of data from the SONIA 2 clinical trial has now been completed and very positive trends have been identified!

Marco’s fortnight at Findacure

by Guest | Jul 26, 2019 | Meet the team

In this week’s blog, we would like to introduce you to our new volunteer, Marco Gallotta. Marco joined us from Royal Holloway University London for a two-week placement which focused on the development of e-learning materials for our portal.

Findacure on Tour!

by Taryn Challender | Jul 19, 2019 | Findacure team, Rare disease world

The past few weeks have certainly been varied for the team here at Findacure! Taryn, Mary Rose, and Rick have all been out and about raising awareness of rare diseases!

‘Growing your patient community’ webinar

by Taryn Challender | Jul 12, 2019 | Findacure events

On 11th July, our Patient Group Engagement Manager, Libbie, ran a webinar entitled ‘Growing your patient community: identifying patients and groups online’.

Peer mentoring summer meet-up

by Taryn Challender | Jul 5, 2019 | Findacure events

On 21st June, Findacure hosted its peer mentoring summer meet-up at Hamilton House in London, with attendees travelling from as far afield as northern Scotland.

Rare Disease Ghana Initiative: A case study

by Guest | Jun 28, 2019 | Rare disease world

In this week's blog, Samuel Agyei Wiafe, founder/executive director of Rare Disease Ghana Initiative, gives us an insight into his organisation's journey so far. Rare diseases reflect a group of conditions with low prevalence, often accompanying the individual from...

Understanding Empathy – The realities of living with a rare disease

by Guest | Jun 21, 2019 | Rare disease world

This week’s blog features one of the fantastic entries we received for our 2018 Student Voice essay competition. Here, Zainab Ganiyu-Dada from Barts and the London School of Medicine and Dentistry discusses the importance empathy and understanding in clinicians'...

Celebrating three years with Mary Rose!

by Mary Rose Roberts | Jun 14, 2019 | Meet the team

This week marks Mary Rose's third year at Findacure. In today's blog she looks back on her time here so far and shares some of her favourite memories through the art of photography. This week I'm celebrating my third-year anniversary here at Findacure. Wow! I can...

What makes a good lightning talk? Findacure’s top four tips

by Taryn Challender | Jun 7, 2019 | Findacure events

So you’ve attended our events and are an expert in your disease area. You’ve done all the research and are passionate about raising awareness of rare diseases. Then why not do a lightning talk at our upcoming Rare Disease Showcases in Cambridge and Manchester? ‘Oh but...

Meet our 2019 Patient Engagement Committee! (part II)

by Taryn Challender | May 31, 2019 | Meet the team

After our patient engagement committee kick-off meeting in London earlier this month, we would like to introduce you all to our newly-appointed committee whose expertise will enable us to shape the work we do in the rare disease community! Every single one of our...

The Power in a Name: Teaching future doctors the value of providing a definitive diagnosis in the support of patients with rare disease

by Guest | May 24, 2019 | Rare disease world

This week’s blog features one of the outstanding entries we received for our 2018 Student Voice essay competition. Here, Megan McGlone from the University of Glasgow explores the impact of diagnosis on rare disease patients' ability to identify with a community and receive the support they so urgently require.