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 Mary Rose, our Head of Operations: email@example.com
In the rare disease field, patient groups play a crucial role in supporting patients and motivating research into their overlooked conditions. However, research from Global Genes found that half of the thousands of rare diseases do not even have a disease-specific...read more
[row][two-third] We at Findacure spend a lot of time advising patient organisations how they can better their patient outreach and support. It isn’t often though, that we get to attend a workshop targeted at patients with a specific rare disease. To better understand...read more
At Findacure, we love to speak to patients, and spend a lot of time thinking about the unique needs and challenges of being diagnosed with a rare disease. Despite this, we rarely get to be part of a patient’s interactions with the NHS. Earlier this month I got this...read more
Compare and contrast the medical experience of a patient with a rare disease and one with a common condition
This week's blog features another of our fantastic essay competition submissions. Jessica Grace uses her personal involvement as both a doctor and patient to compare the medical experiences associated with common and rare conditions. Patients with rare diseases face...read more
[row][two-third] At the start of March, we brought together our group of teenagers once more for the final day of the Cross Your Own Oceans project. [Click here to read the launch blog] We met mid-morning near Waterloo station, to kick off our adventure day with a...read more
[row][two-third] Collaboration is key for rare disease research. Collaboration between multiple stakeholders brings together a wide range of perspectives and experiences, leading to more effective and appropriate research. This is something we aim to promote in all of...read more
[row][two-third] It was a dense, foggy morning when the Findacure team rolled up to the infamous Silverstone circuit. Shivering as they gathered their belongings from the car, they dwelled on the ordeal about to face them: 13 miles, or 21 kilometres, of running on a...read more
On Rare Disease Day, 29th February, Findacure hosted our third annual scientific conference, focussing on drug repurposing for rare diseases. The question on your lips may well be, why? Well, to answer that, we should first clarify what a conference even is. The font...read more
[row][two-third] We are delighted to announce that The Patient Group Handbook, edited by our founders, has been published! The book consists of 25 practical chapters about research and drug development in the rare diseases field, including: How to set up and manage a...read more
Mark Jacunski, a medical student from King's College London, is one of our three essay competition winners. His writing explores the medical and ethical issues involved in treating rare diseases with off-label prescriptions. In 1999, Jesse Gelsinger became the first...read more
[row][two-third] Our last blog in the build up to Rare Disease Day has been written by Maria Piggin, founder of PNH Support. Paroxysmal Nocturnal Haemoglobinuria (PNH) is a rare blood disorder where the bone marrow produces blood cells without their usual protein...read more
2015 was a fantastic year for Findacure. While continuing to achieve high standards in our existing projects, such as our patient training workshops, we also launched our peer-mentoring scheme, Cross Your Own Oceans project, and online portal. We hired another member...read more