Rare Diseases

Views Navigation

Event Views Navigation

Events

Today
  • Hypermobility spectrum disorders(HSD) and Hypermobile Ehlers-Danlos syndrome (hED)

    LIVE STREAM

    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.

    £25
  • Understanding ME/CFS, symptom crossover with hEDS/HSD and implications for Long Covid

    LIVE STREAM

    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 […]

    £25
  • Get Started with Genomics CPD Course

    University of Exeter St Luke's Campus, Heavitree Road, Exeter, United Kingdom

    The implementation of next-generation sequencing technologies has enabled genomics to become a mainstream subject in medicine. The UK has now adopted Whole Genome Sequencing (WGS) in clinical practice, and the use of genomic sequencing technologies in healthcare has become widespread across many countries. Healthcare professionals across the world need the skills to understand genomics and […]

  • RAREfest22: Educate, Engage, Empower

    The Guildhall Market Square, Cambridge

    FREE to attend, RAREfest22 is a public-facing, rare disease inspired festival featuring interactive talks, demos and exhibits, film and art showcasing ground-breaking science, visionary technology and pioneering organisations improving lives and bringing hope to those living with rare conditions. An award-winning festival that is as UNIQUE as the patients it champions. Featuring the brightest minds […]

  • Shining a Light on Silver-Russell Syndrome (SRS) on Rare Disease Day

    ONLINE

    Join 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

    ONLINE

    11.00 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? 11.30 am Dr Robin Lachman (University College London) – Does Evidence-based Medicine Work for Rare Diseases? 12.00 pm Fleur Chandler (Sanofi) Putting it into perspective, […]

  • Beyond the Student Voice Prize

    LIVE STREAM

    The 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 […]

  • Reframing Rare Disease

    Clare College Medical and Veterinary Society

    It may be impossible for all doctors to have knowledge of more than 7,000 recognised rare diseases. However, it is feasible for all future and current medical professionals to learn when to suspect a rare disease, to appreciate that rare diseases are collectively common and to recognise the exceptional challenges faced by those affected. At […]

    Free
  • RSE Network Support Meeting

    ONLINE

    Rett 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 […]

  • SFGH Global Health Conference

    Manchester Royal Infirmary

    Students for Global Health is excited to announce that our Annual Global Health Conference which will be held in Manchester over the weekend of March 25th-26th! Students for Global Health is an organisation, network and community. In our 20 year history, we have evolved into the leading student voice for health, representing students who are […]

    £15