The International Rare Disease Showcase is a virtual event like no other, bringing everyone together including, patient groups, researchers, medical professionals, industry representatives and of course patients themselves. Here's what to expect: Three days of interactive sessions led by global experts and advocates Conversations on policy, patient advocacy, access and approval, new technologies, research and data collection with […]
During times of global disruption, it is often those who are already disadvantaged that are disproportionately affected. Theme 2 of the ARDEnt report highlights this impact on those with rare conditions. Jointly organised with ARDEnt, this webinar will examine how the reduction to healthcare, social services and SEND (special educational needs and disabilities) education has had a devastating impact that […]
The Unusual Suspects: Rare disease in everyday medicine is returning to The Royal Society of Medicine on 9th February! The M4RD Annual Symposium has been a popular event in the rare disease calendar for many years, allowing healthcare professionals at all levels, trainees and students to come together to learn more about the importance of understanding rare […]
Jointly organised with ARDEnt, this webinar will discuss the recommendations the ARDEnt team is using to help inform how the UK is going to deliver its objectives set out in the UK Rare Diseases Framework, published in January 2021. The webinar panel includes members of ARDEnt and those responsible for overseeing the impact of the Framework […]
Every person has two copies of each gene, one inherited from each parent. Most genes are the same in all people, but a small number of them are slightly different. These tiny differences contribute to each person’s unique physical features. Let’s explore rare imprinted genes, a special class where one parental copy is switched off, […]
Researchers developing new treatments for children with rare brain tumours know that it’s not a case of treating children like tiny adults and that surviving the disease isn’t enough. Reducing the damage done by treatments is just as important to the survivor. Discover how researchers are minimising damage and why they think studying rare children’s […]
Getting wider access to drugs for as many patients a possible is a clear priority in the drug development process, especially for patient groups who are working to secure research into and treatments for their rare conditions. However, understanding how to secure access to newly developed treatments is an often-neglected challenge. The processes involved in […]
Sign up to learn about the role of communication in rare disease from those affected directly, in an interactive FREE virtual event! About this event The event will kick off with a session from our guest speaker, who will explore the value of effective and sensitive communication skills when it comes to handling complex conditions, […]
This highly-anticipated event provides the unique opportunity to learn about the latest research, treatments, and day to day management of BBS, network with like-minded professionals and more importantly, learn from those living with Bardet-Biedl syndrome. The programme is still being finalised but will include: * Invaluable personal perspectives of living with BBS * An Update […]
We are delighted to announce Beacon's ninth annual Drug Repurposing for Rare Diseases Conference and, for the first time since 2020, it’s returning live and in-person! This annual conference, Drug Repurposing for Rare Diseases, highlights the role that drug repurposing can play in lowering the cost and accelerating the development of rare disease treatments. An […]