Cloudnine has always supported the right cause. And, this February we have decided to take a step forward to join Race for 7& spread awareness about Rare Disease.
The Race for 7 is an awareness run organized in Bengaluru on 28th February, Sunday by the Organization for Rare Disease India (ORDI) – a team committed to addressing the challenges of rare disease patients and their families in India. The event is an initiative to raise awareness about rare diseases and to empower patients and their families with access to national and international resources.
Being a part of Race for 7, it is very important to know what is Rare Diseases and why world celebrates the Rare Disease Day.
What is Rare Disease?
According to World Health Organization (WHO), a disease or disorder is defined as rare when it affects 1 or less, per 1000 population. 80% of rare diseases have identified genetic origins whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative. 50% of rare diseases touch children. As per record, more than 7000 rare diseases have been documented so far.
Why is Rare Disease Day celebrated?
Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. The event targets primarily the general public and seeks to raise awareness about the disease.
Cloudnine @ Race for 7 Event
On World Rare Diseases Day, ORDI is conducting a running event in Bengaluru on 28th February, Sunday to raise the awareness of Rare Diseases. In this event, 7000 people will be running for 7000 meters (7 kilometers) to symbolize the 7000 identified rare diseases. The event is a great platform for spreading awareness and raising funds to enhance our reach for helping patients with rare disorders. Cloudnine, the leading hospital in mother and child care is extremely proud to be associated with this event. Being one of the sponsors of the event is a great way to support the noble cause. After initiating New Born screening compulsory for the first time in India, now Cloudnine has step to support the Rare Diseases Awareness Event in India.
Do take part in ‘Race for 7’, because only our matching strides with rare disease patients would ensure they are not running a losing race.
A rare disease is ahealth condition or infection that affects a very small number of people. Some examples of rare diseases include cystic fibrosis, Huntington’s disease, spinal muscular atrophy, Gaucher disease, and haemophilia. These diseases affect very few people worldwide, making them rare.
A rare blood disease is a medical condition that impacts the production, functioning, and clotting of blood cells. It includes red cells, white cells, and platelets. It is considered “rare” because it affects only a small percentage of the population and is difficult to diagnose.
According to current global data, MS is not rare and is highly prevalent among young adults in North America and Europe. However, MS is rare in Asia and Africa. It is a chronic neurodegenerative disease that is quite common in some parts of the world, so it is not a rare disease.
ALS - Amyotrophic Lateral Sclerosis is a rare neurodegenerative disease that progresses very quickly after its onset. It is the most common among motor neuron diseases with devastating outcomes. ALS does not have a known cause or cure.
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