Online workshop: Understanding access and reimbursement
ONLINEGetting 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 […]
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Webinar
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 […]
The genetics of intellectual disability: Episode 15
LIVE STREAMThis 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 […]
Facing up to the genomic gap: Tackling equality and diversity in genomics on
LIVE STREAMThis webinar is part of the popular Genetics of webinar series and will discuss the challenge of equality and diversity in genomic research and clinical settings and strategies to address this. Genomic research has traditionally been focused on caucasian populations, which leads to inherent biases in genomic findings translated into clinical research. Underrepresentation of other populations in […]
Young People’s Genomics Café
LIVE STREAMAre 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 […]
Shining a Light on Silver-Russell Syndrome (SRS) on Rare Disease Day
ONLINEJoin us for this ONLINE event on Rare Disease Day 2023, find out about how rare genetic conditions, like SRS, are diagnosed and hear about what it’s like to live with Silver-Russell syndrome (SRS). Featuring Gracie Taylor, Patient Voice (& Science Insights Alumni) Prof Mary Porteous, SE Scotland Rare Disease Diagnostic Service Dr Emma Wakeling, Clinical Genetics and Genomics Consultant, Great […]
Conducting rare disease research in the context of clinical care
ONLINE11.00 am Introduction and welcome Tony Lockett (CPMR London) 11.05 am Dr Lucy McKay (Medics for rare diseases)- Can Medical Education Help in the Conduct of Research in Rare Diseases? […]
Beyond the Student Voice Prize
LIVE STREAMThe Student Voice Prize is delighted to invite you to our second annual virtual rare disease day event 'Beyond the Student Voice Prize;' an opportunity to connect with peers and patient group leaders to learn more about the rare community and how you can get involved and continue your advocacy. What can you expect? The […]
RSE Network Support Meeting
ONLINERett syndrome is a rare, genetic, neurological disorder affecting mainly females (1:10,000) and very few males. It is present from conception. After a period of ‘near normal’ development, the child experiences a regression in key skills, usually mobility, speech and hand use between the ages of one and two years. The child may appear very […]
Beyond the clinic: Sickle Cell Disease
The Royal Society of MedicineThis webinar continues a new series of webinars that highlights the lived experiences behind genetic conditions. In an effort to highlight experts outside of the medical field the Medical Genetics […]