Individually, people diagnosed with a rare disease are part of a tiny fraction of the population. Ehlers-Danlos Syndrome, a rare disease with one of the highest prevalence rates, has only 6021 individuals as of 2019. Despite this, with over 7000 individual rare diseases identified, when these groups are put together they account for up to 3.5m people in the UK, roughly 5.2% of the population. The pathways that these individuals go on are often shared between everyone diagnosed with a rare disease, and it is on this basis that we decided to create the Rare Disease Network.
This group is designed to be a community for anyone diagnosed with a rare disease, to share stories and experiences with other people. Most members of this group have been diagnosed with a disease that is not the same as other members, but through shared experiences they can find answers and support.
Within the group, we provide members with insights into our research into rare disease, the chance to talk to thought leaders and ask questions to them outside of a medical setting and a space to share stories and experiences. We also offer opportunities for members to take part in our paid studies.
Towards the end of last year LDA Research conducted the first of these studies, a survey with people diagnosed with a rare disease or caregivers of people diagnosed with a rare disease. The aim of this study was to gather insights into what is it like to live with a rare disease, and see what health care professionals and companies can do to better support people with a rare disease. In total, we were able to gather insights from 406 respondents from across the United Kingdom, United States, Canada and Australia. We have since been working through the detailed responses, which highlight the difficulty it takes to be heard and diagnosed, and the lack of support that people are current receiving. These difficulties are often shared across the variety of diagnoses, countries, ages and genders reported.
From this study, we are currently conducting in-depth interviews with people diagnosed with a rare disease to further explore the lack of support, why they are experiencing a lack of support and what they would like to see implemented to provide support for themselves and others diagnosed with a rare disease.
We have more plans for community which are in the pipeline, to make the Rare Disease Network a space for people diagnosed with a rare disease or those caring to engage, share stories and find a community of people who are rare together. if you are interested in learning more about the Rare Disease Network, our work with the Rare Disease community or our free rare disease survey report please contact us or email on [email protected].
