Brussels 26 November 2015 // The prevalence of neural tube defects (NTD) in Europe has not declined substantially in the past 20 years, despite long-standing recommendations for women to take folic acid supplements if planning a pregnancy, is the main finding of a new study, published in the British Medical Journal (BMJ). Total prevalence remains ~9 per 10.000. According to Hermien de Walle from EUROCAT, this could be 5 per 10.000 with optimal use of folic acid.
Experts analysed data for more than 11,000 cases of neural tube defects from 28 EUROCAT registries covering approximately 12.5 million births in 19 countries between 1991 and 2011.
Brussels 25 November 2015 // On the last day of February, usually the 28th, but in 2016 on February 29, a rare day in a leap year, the World Rare Disease Day takes place to raise awareness of rare diseases and to improve access to treatments and medical representation for individuals with rare diseases and their families.
The theme for the 9th annual World Rare Disease Day is “Patient Voice” to recognise the role that patients play in making their voices heard and in encouraging change that improves their lives.
Brussels 11 November 2015 // Delegates from 30 organizations of persons with disabilities (DPOs) in Africa, members of the African Disability Forum (ADF), held their first General Assembly meeting, 31 Oct.-1 Nov. 2015 at the Desmond Tutu Conference Center in Nairobi, Kenya. ADF is the pan-African membership organization of DPOs at continental, sub-regional and national levels, created to unify and amplify the voice of persons with disabilities in Africa and strengthen the technical capacity of their organizations.