Ultra Rare Disease Day 2014 Northern Ireland

Ultra Rare Disease Day is on the 27 November 2014 we have set up this day to fight for the little children all over the world who have an ultra rare disease Ultra Rare Disease Are Too Often Excluded From Health Systems And Socially Marginalized Ultra Rare Disease Are Often Very Complex Diseases and They Meet With Many Problems:

Lack of research

Lack of access to correct diagnosis

Delay in diagnosis

Lack of quality Information on the disease

Lack of scientific knowledge of the disease

Heavy social consequences for patients

Lack of appropriate quality health care

Inequities and difficulties in access to treatment and care

We ask you for your support for children with Ultra Rare Diseases they need someone to fight for them and most of Reare Disease Patients Are Children Rare Diseases are often chronic,progressive,degenerative,and often life-threatening there is also a high level of pain and suffering for the patient and the family and with the prospect of no existing effective cure,There are between 6000 and 8000 rare disease and 50% of rare diseases affect children