Raising Awareness and Hope: Celebrating Rare Disease Day

On the last day of February each year, chosen to highlight the rarity of the 29th in a leap year, is Rare Disease Day. The aim is to raise awareness among policymakers and the public about the 300 million people worldwide living with a rare disease.

In the UK, an estimated 3.5 million people have a rare disease or condition. Since the campaign’s inception in 2008, the UK has actively participated in initiating research and generating change.

At CARE, we see patients with rare diseases, such as Ehlers Danlos Syndrome (EDS), in our rheumatology clinics and are actively involved in research collecting valuable data for the rare metabolic disorder X related Hypophosphataemia (XLH).

Other rare conditions under CARE’s remit include Giant Cell Arteritis (GCA), Polymyalgia Rheumatica (PMR), Polymyositis, Juvenile Idiopathic Arthritis (JIA), Scleroderma and Systemic Lupus Erythematosus (SLE).

Supporting Leeds Institute of Rheumatic and Musculoskeletal Medicine at St James’s University Hospital, CARE is engaged in a study to learn more about how genes affect the nature of GCA and PMR, including outcomes and treatment responses.

In addition, a significant GSK-funded study continues to contribute to knowledge about rare conditions such as SLE.

Last year the Rare Disease Day campaign highlighted the power of resilience and connection for those living with rare cancers, metabolic, genetic and neurological conditions. This year the campaign will see over 600 events worldwide, across 106 countries.

For more information about the research CARE is undertaking, click  Here

For more information and stories about Rare Disease Day, visit www.rarediseaseday.org

View All News >>