Rare Disease Day: Living With a Rare Disease

by Shirley Johanna on Feb 28 2015 5:13 PM

 Rare Disease Day: Living With a Rare Disease
The Indian Society of Clinical Research (ISCR) and the Organisation for Rare Diseases India (ORDI) are keen to intensify the clinical research for treatment of rare diseases.
ISCR and ORDI teamed up to highlight on this year theme, 'Living with a Rare Disease'. The theme foucuses on the lives of people with a  rare disease condition, as well as the families, friends, and caretakers of the patients, whose lives are also impacted.

ORDI is drafting an ‘orphan drug policy’ to help patients with rare diseases. Orphan drugs are specifically developed to treat rare disease condition.

Prasanna Shirol, Founder Member, Organisation for Rare Diseases India at an event organized by ISCR said, "We need to create a strong ecosystem for rare diseases in India, including a patient registry and a supportive national policy and regulatory environment. Patients suffering from rare diseases have an equal right to benefit from new medicines and treatment available to patients in other parts of the world.  There are over 70 million patients in India who suffer from an estimated 7000 plus rare diseases. Yet there is no treatment for more than 90 percent of these diseases, patients of whom have to depend only on supportive therapy."

Dr Vikas Sharma, Member of Ethics Council, and ISCR said, “We consider a disease rare in India if it affects 5000 of our population or less and given the large population we have. The absolute numbers are significant for rare diseases to receive quick and urgent attention. Given the huge burden of rare disease we have in India, there is an urgent need to invest in clinical research to ensure that patients have access to new drugs and treatment that research makes possible.”