Join our Twitter chat on 21st September to discuss and learn about providing support to patients on a long and complex journey
The path to diagnosing a rare disease can be long and challenging. Numerous visits to the hospital and medical tests can put an enormous strain on an individual, their family and the healthcare professionals involved.
The route to finding answers
For some, an answer is never found. Around 6,000 children a year are born with an undiagnosed genetic condition in the UK (source: Swan UK), and around 50% of them will not receive a confirmed diagnosis. This could be because the condition has never been seen before, or because it is an unusual presentation of a known condition.
The link between variations in our DNA – our genomic information – and our health is becoming clearer. With advances in technology and understanding, the potential to provide answers is growing all the time.
Share your experience by joining our Twitter chat
To mark Jeans for Genes Day 2017, the Genomics Education Programme will be asking healthcare professionals from across WeCommunites to share their experiences of supporting patients and families in their search for a diagnosis. You can join the Twitter chat using the hashtag #WeMDT.
During the chat we’ll be asking:
- Have you had first-hand experience of a diagnostic journey?
- What was your role in the process?
- Who do you think has responsibility to support the patient and their family through this journey?
- How did you manage the expectations of the individual and their family?
- Did you feel supported as a health professional during the process?
- What practical information would be helpful to support your role?
- With advances in fields such as genetics and genomics, what do you think the future holds for patients with undiagnosed conditions?
Our Twitter chat will be hosted by @WeNurses, using #WeMDT, and will run from 8pm on Thursday 21st September.
For more information or to ask questions in advance of the chat, you can contact us directly.