Understanding Rare Disease: Communicating with Patients
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 […]
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 […]
This webinar is part of the popular Genetics of webinar series and will provide an interesting update on the genetic origins of intellectual disability, as well as explore what challenges remain in this area. Our speakers will explore what research is required after a genetic diagnosis of intellectual disability and what families would value the most from the […]
Join the RSM at this multidisciplinary event which will provide a valuable overview and a broader understanding of hypermobility syndrome and the care of these patients. Experts in their field will present a series of talks that will inform delegates about practical guides for the assessment and management of this condition and will explore how […]
The European Conference on Rare Diseases & Orphan Products (ECRD) is recognised globally as the largest, patient-led rare disease event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape goal-driven rare disease policies and allow for important and innovative discussions on a national and an international level to take place. ECRD 2022 will take […]
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 […]
The third edition of the Innovation Bootcamp in Rare Diseases (IBRD2022) congress in Brussel will be held on October 11th 2022. The target audience of this event includes all professionals involved in the prevention, treatment and diagnosis of rare diseases and orphan drug research and development, including researchers, clinicians, pharma, policy makers and patient representatives. […]
Are you a young person interested in finding out more about genomics and health, or affected by a rare or genetic condition? Chromosomes! Dr Andrew Fry, Clinical Senior Lecturer in Medical Genetics, Cardiff University An Introduction to Pharmacogenomics Sophie Harding, Pharmacogenomics Lead, Royal Pharmaceutical Society of GB Medics4Rare Diseases Lucy McKay, CEO Medics4RareDiseases Everyone is […]
Training for Health Professionals on hypermobility spectrum disorders(HSD) and Hypermobile Ehlers-Danlos syndrome (hEDS) The online course includes presentations and interactive case-based sessions for Health Professionals and those who wish to gain further knowledge and advance their clinical practice in assessing and management children and adults with Hypermobility Spectrum Disorders, Hypermobile Ehlers Danlos Syndromes and associated conditions.
Dr Sue Pemberton PhD is a qualified occupational therapist who was involved in setting up the Leeds based Chronic Fatigue Syndrome Service in 1990, one of the first NHS clinics specifically for the condition. She wrote the original therapy programme and worked clinically with the service for over 22 years, in addition to holding a […]