Rare diseases: Why awareness is necessary?

Rare diseases are illnesses that affect only a tiny number of people. The World Health Organisation defines uncommon diseases differently in different countries. A rare disease, for example, is one that affects fewer than one in every 2,000 people in the European Union. However, more than 7,000 uncommon diseases afflict about 400 million people worldwide. These disorders are frequently misdiagnosed or go untreated, giving patients little chance for effective therapy.

Rare diseases can have a major impact on individuals and their families. Many rare diseases are chronic or even fatal, with little or no effective treatment available. In addition to medical symptoms, people with uncommon diseases may face feelings of hopelessness and isolation, as well as emotional and social challenges. They may feel stigmatized or misunderstood, making it difficult for them to obtain adequate medical care.

Rare diseases can have a large financial impact. Rare disease treatment is mostly not covered by regular MEDICAL INSURANCE policies. Medical expenditures can quickly accumulate, leaving families unable to make ends meet. There are several factors, such as delayed diagnosis, inadequate treatments, etc. which might exacerbate financial and emotional troubles.

Why is it critical to promote awareness?

The vast majority of rare diseases have a genetic cause, with well-known examples including cystic fibrosis, sickle cell disease, Huntingdon’s, and various muscular atrophies and dystrophies. While these examples have been well-studied, there are many more rare disease types that much less is known about.

Improved awareness can play a critical role in early detection and intervention of rare diseases. In addition, by uniting patients, health workers, and the general public alongside researchers, policymakers, and industry representatives, awareness events like Rare Disease Day can help drive the systemic change and economic incentives needed to stimulate rare disease research.

Ikris Pharma Network: Providing access to rare disease medicines

Ikris Pharma Network is a licensed access provider for generic and novel medications for rare disorders and other conditions. It facilitates patient treatment by importing drugs from prominent countries such as the United States, Europe, Japan, Australia, and others that are not even available in India.

We strive to raise awareness about it through social media posts and ongoing initiatives. “Rare is many, Rare is strong, Rare is proud,” says the Ikris pharma network. We have treated over 50000 patients in 150 countries and hope to serve as many people as we can within our limits. Please contact us for further information on uncommon diseases and the types of medicine we deal with.

References-

https://www.pharmaceutical-technology.com/sponsored/rare-disease-day-why-raising-awareness-is-essential-for-a-fairer-future/

https://www.hdfcergo.com/blogs/health-insurance/importance-of-raising-rare-diseases-awareness#:~:text=Raising%20awareness%20of%20rare%20diseases,more%20inclusive%20and%20supportive%20society.