February 28, 2019

Rare Disease Day takes place on the last day of February each year. The aim of this day is to raise awareness amid the general public and decision-makers about rare diseases and their impact on patients’ lives. The campaign was launched in 2008 by the European Organisation for Rare Diseases and is now recognised in 64 different nations. On this day hundreds of patient organisations hold awareness-raising activities all over the world.

The theme for this year “Bridging health and social care”, focuses on uniting the gaps in the medical care, social and support services to ensure that patients with rare diseases and their family receive timely and appropriate access to diagnosis and treatment.

1 in 20 people will live with a rare disease at some point in their lives and despite this, there is still no cure for many of those diseases and many of them go undiagnosed. This day hopes to improve the knowledge of the general public while encouraging researchers to address the needs of those living with these kinds of diseases.

Rare diseases include cystic fibrosis, sickle cell disease, pulmonary hypertension, scleroderma and spinal muscular atrophy. Each of these diseases greatly impacts everyday life which calls for the need for daily care routines. Organising care may involve, making phone calls, accessing treatments and rehabilitation, researching local service and adapting to home or work space. As a result of this, many patients are often absent from school or work.

According to a study carried out by Rare Barometer in 2016, 8 in 10 patients have difficulties completing basic tasks. Therefore, most of the care is coordinated by patients and their families. This requires them to manage care-related tasks alongside their responsibilities which can be time consuming.

For many this is a complex and frustrating process, particularly when there is a lack of coordination across services and when those services are not delivered efficiently to meet patients’ best interests.

Rare Disease Day is open to everyone including patients, individuals, health professional etc. It is important that we all join forces to give hope to patients and tackle the issues surrounding rare diseases all over the world. To see how you can participate check out rarediseases.org. You can also get involved by purchasing a denim ribbon which is the universal sign for rare and genetic disease awareness.

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