Mesothelioma Research One Focus of Rare Disease Day

There are more than 6,000 rare diseases, 80% of which are of genetic origin. Collectively there are more than 30 million Americans who suffer from a designated rare disease. Patients who are diagnosed with rare diseases like mesothelioma face many additional challenges because so few physicians are aware of their condition and so few treatment options are available. For this objective, the Ministry of Health (MoH) organised public awareness lectures and entertainment programmes to patients of rare diseases and metabolic disorders organized by the Pediatrics Department in association with private establishments as part of community partnership.

Therachon AG, a biotechnology company focused on rare genetic diseases, has joined forces with health care advocates around the world for Rare Disease Day® on February 28. "'Do Your Share for Rare' is an attempt at more widespread awareness, which for someone living with a rare disease, means a great deal".

Research can lead to the identification of previously unknown diseases, can increase our understanding of diseases, can enable doctors to give a correct diagnosis, lead to the development of new innovative treatments and possibly even a cure, reduce costs for healthcare systems, and improve the quality of life of patients and their families.

The first-ever community-driven public service announcement launched today to kick off the campaign, driving viewers to DoYourShare.com, a supporting website featuring community stories, an opportunity for those living with a rare disease or those involved in the community to share their story, and ways to get involved in areas ranging from awareness and advocacy to research and donation. Lack of awareness and scientific knowledge in rare diseases often leads to misdiagnosis or late diagnosis and delayed treatment.

This year's theme for Rare Disease Day, which is to be observed on February 28th, is "research", and slogan is "With research, possibilities are limitless". "It is our life's work to ensure that rare diseases, like achondroplasia, are recognized and receive the same amount of research as other disease states".

  • Joanne Flowers