Rare Disease Day takes place on the last day of February each year. The main objective is to raise awareness for all rare diseases and the impact they have on patients' lives. Whilst also prompting researchers, universities, students, companies, policymakers, and clinicians to do more research and to make them aware of the importance of research within the rare disease community. Building awareness is vital because 1 in 20 people will live with a rare disease at some point in their life. Yet the majority of rare diseases have no cure and/or go undiagnosed for many years.

Over 300 million people are living with one or more of the over 6,000 identified rare diseases worldwide each supported by family, friends and a team of carers that make up the rare disease community. But having a rare condition is far from easy and requires a team of people to effectively manage regardless of our diagnosis. For example:

• Fighting For The Correct Diagnosis
• Sourcing Relevant Consultants
• Accessing Treatments
• Acquiring Specialist Equipment
• Learning To Administer Medication
• Coordinating Physical Care
• Reducing Economic  Burden
• Monitoring Mental Wellbeing
• Minimising Impact On Family Life