Unique provides various services such as our helpline, numerous information guides and a magazine and we hold regular regional family social events. We also maintain various social media resources like our Facebook Café. However, you might not be aware of all the additional work the Unique Team does to raise awareness among professionals and the general public of the challenges that our member families face.
In the first three months of 2019, we have been very busy representing Unique and our member families at a wide variety of workshops, conferences and advisory boards. For example, our information officer Arti gave presentations to a study day for trainee genetic counsellors at Guy’s hospital and then to the Festival of Genomics in London. She and another of our information officers Claire also manned an awareness-raising stand at the Clinical Genetics Society conference in London. Beverly, our CEO, participated in the “Shaping the Future of Rare Disease Together” summit in San Diego for global patient advocacy leaders. She has also given presentations to clinicians on a developmental paediatrics training course run by Brighton Medical School and to the West Midlands Genetics Laboratory team in Birmingham and is speaking at the first EnGagE workshop on the “Principles of Psychiatric Genetic Counselling and Testing” in Paris on 12th April. In addition, she has given two community genetics teaching sessions for 2nd year medical students at University College, London.
Unique team members are also involved in various advisory boards and committees. For example, Beverly is one of two patient representatives on the UK’s Department of Health and Social Care (DHSC) Rare Disease Policy Board and is also involved in the patient empowerment group of Rare Disease UK. We’ve also been cited as co-authors on a few new papers published recently in medical journals.
Spreading the word is so important…. you can help us do that during Chromosome Disorder Awareness Week in June… keep an eye out on our website, Facebook, Twitter and sign up for our emails to keep up to date.