Tuesday, 12 December, 2017

Bahrain marks World Rare Diseases Day

Melissa Porter | 01 March, 2017, 00:45

Cambridge BioMarketing, the world's leading rare disease and specialty communications agency, today announced the public availability of Rare in Common, a film project honoring people living with the challenges of a rare disease. Such newly defined genetic rare subtypes in common diseases may be informative to a rare disease when the causal genes are the same.

Niall Dickson, chief executive of NHS Confederation, which runs the NHS European Office, said: "While millions of people suffer from a rare disease, the number of patients with a particular disease in each country is so small that expertise and treatments are not always available".

Summit Therapeutics PLC (NASDAQ: SMMT LON:SUMM) has hailed the tenth annual Rare Disease Day, 28 February 2017.

"There are still no known cures for majority of rare diseases and treatments costs are extremely high, more so in India. Clinical research will help us find better and more effective treatment", Suneela Thatte, President of ISCR told PTI. "ERNs have taken this joined-up approach a step further, allowing more formal and organised cooperation for the diagnosis and treatment of rare disease patients". NORD represents more than 250 disease-specific member organizations and their communities and collaborates with many other organizations in specific causes of importance to the rare disease patient community. The event has been marked worldwide since 2008, and is meant to draw attention to the over 7,000 rare conditions that have been specifically identified as an orphan disease.

"Rare Disease Day is an important day of recognition for those living with rare conditions". The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases. "World Rare Disease Day raises awareness and solidarity, and our company is thrilled to be a year-round stakeholder by defining new rare diseases, improving diagnostics, generating new biological knowledge and inspiring novel targeted drug strategies".