Rare diseases are not so rare…. Since every life matters!!!
The word orphan comes from the Greek word ‘orphanos’, a child who has lost one parent or both, or an adult who has lost a child. But see the dilemma, a Rare disease or an orphan disease still exists with no loss of a parent but still it is called ‘Orphan’.
In the US, it is defined as one that affects fewer than 200,000 individuals, often referred to as a disease that affects a small percentage of the population. Many of the thousands of rare diseases lack effective treatments. However, economic and regulatory incentives, as well as advances in our understanding of disease etiology, have encouraged increased investment in the development of drugs for rare diseases — the so called ‘orphan drugs’.
The awareness is increasing and we see a theme from Rare Disease Day 2014 which says “Join together for Better care” has changed to “Living with a Rare Disease” in 2015. It pays a tribute to the millions and millions of parents, siblings, grandparents, spouses, aunts, uncles, cousins, and friends whose daily lives are impacted and who are living day-by-day, hand-in-hand with rare disease patients.
Let’s Create Awareness, by bringing all the knowledge we have to the table and educate everyone in the healthcare fraternity. Patients, families and organisations are pivotal to creating solutions for the daily challenges of living with a rare disease.
The National Organization for Rare Disorders (NORD) motto changed from its pioneering times: “Out of the Darkness into light” to “Alone we are Rare, Together we are Strong”. All these slogans are valid to describe the rise of rare disease patients around the world from ignorance to recognition, from isolation to unity and from silence to voice.