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Can I Get Coverage for Rare Diseases in My Health Insurance Plan

Published On Aug 23, 2023, Updated On Aug 30, 2023

The human body is such that it can survive harsh conditions and can also get hundreds of different illnesses at the same time. While certain conditions like diabetes are generally prevalent among people, a number of individuals also get affected by some unusual diseases. They only affect a handful of people, and this rarity presents specific worries. Fewer than a person out of every 2,500 Indians suffers from a rare condition. Even though the expense of treatment may be considerable, people with rare diseases can receive it. However, health insurance policies are available to assist you in paying for medical expenses. Let us learn more about health insurance in India, keeping rare diseases at the forefront.

Understanding Rare Diseases

Can I Get Coverage for Rare Diseases in My Health Insurance Plan

Rare diseases are conditions that only affect a small portion of the population. The World Health Organization (WHO) defines a rare disease as one that strikes one or a smaller number per 1000 people. A person can get a rare disease as early as childhood, considering about 72% of rare diseases are inherited. It makes them fatal, and those with a rare disease must endure for the rest of their lives. Nearly 96 million Indians, or 1/5th of the country's population, now have a rare disease.

Types of Rare Diseases

Over 7,000 rare diseases exist today. They have an overall impact on millions of individuals throughout the world. Among the most prevalent rare diseases include:

  • Pompe
  • Sickle Cell Anaemia
  • Haemophilia
  • Osteopetrosis
  • Cystic Fibrosis
  • Haemangioma
  • Gaucher Disease
  • Tyrosinemia
  • Maple Syrup Urine Disease
  • Fabry Disease
  • Wolman Disease
  • Hurler Syndrome


  • Many rare diseases have unidentified causes.
  • Rare diseases are not always hereditary disorders, and vice versa.
  • One can observe the signs from early childhood or even from birth.
  • They are severe, progressive, and often chronic.
  • 50% of them manifest in one's adulthood.

Health Insurance Coverage

Several health insurance schemes cover the expense of treating a rare disease. The costs of the therapy will be covered by your health insurance plan. However, you must be aware that not all rare illnesses get coverage under health insurance plans in India. Before purchasing insurance, be sure it covers a list of the conditions. Rare diseases can have significant treatment expenses. Depending on your budget, you may choose health insurance for them with a sizable coverage amount. It will cover the visits, operations, post-hospitalization checkups, diagnosis testing, and other medical expenses. Depending on the ailment and the chosen insurance, a waiting period of a few days to two years may also apply.

Waiting Period

While a 30-day starting waiting time for all health insurance policies exists, coverage for most rare diseases becomes accessible after a 2-year waiting term. Thus, the cover is not immediately available when you purchase the plan. You must first wait throughout the period before receiving it. It indicates that your insurance company will only pay the expense of treating a rare condition when your health insurance coverage has been renewed twice in a row.

If you get diagnosed with a rare illness before you get the coverage, it will be regarded as a pre-existing condition. In this situation, a waiting time for pre-existing diseases will be applied. After two to four years of continuous coverage, many health insurance policies include pre-existing conditions. It means that to obtain your pre-existing rare disease covered, you might have to wait up to 4 policy renewals.


Most rare diseases have no known treatments. There are no authorized treatments for around 95% of the conditions. Not just the treatment, but even the diagnosis of such diseases gets delayed. Additionally, most of the rare diseases are chronic. Due to this, patients endure further pain. If there is a cure for a rare condition, it is costly. For instance, the expense of treating Pompe may exceed Rs. 35 lakhs. Additionally, the cost of their therapy will be high and last long. Additionally, patients may need to undergo routine diagnostic procedures and be given long-term medication.

Final Words

Rare diseases can be fatal, even though they may not be prevalent. We are living in uncertain times. The only option for those with rare illnesses is to get health insurance because treatments are costly and protracted. You do not have to be concerned about the expense, and you can receive high-quality medical treatment. These diseases are difficult to identify and may need prolonged treatments. Compare plans online and find the best health insurance plan according to your requirements and budget.


Q: What are some of the ways you can prevent rare diseases?

A: Different rare diseases have unknown causes. However, you may take certain safety precautions to maintain a healthy lifestyle. Keep in mind the following to avoid contracting rare diseases:

  • Consume a diet high in fruits and vegetables, especially green ones.
  • Avoid using tobacco and drinking alcohol.
  • Avoid being exposed to dangerous substances.
  • Keep moving and exercise frequently.
  • Get necessary vaccinations.

Q: How can you identify a rare disease?

A: Rare diseases might be hard to detect. Sending a patient to a specialty clinic is the initial phase in diagnosing a rare disease in a person suspected of having one. Because of the sudden onset of typical signs, it may not always be possible to rule out the potential of a rare disease. It is important to note that the early symptoms of rare diseases are frequently vague, and it may take years to identify the underlying issue.

Q: What is the government scheme for rare diseases?

A: Under Rashtriya Arogya Nidhi (RAN), those who suffer from rare diseases specified under Group 1 would receive financial help of over Rs. 50 lakhs. Patients Below the Poverty Line (BPL), with serious and life-threatening illnesses are given financial support. Beneficiaries of this financial aid will not just be BPL households but also roughly 40% of the general population who meet the requirements of the Pradhan Mantri Jan Arogya Yojana. However, they are only entitled to get treatment in government tertiary institutions.

Q: What are some of the hard-to-diagnose diseases?

A: Because of the way and when several illnesses show in patients, a diagnosis is sometimes delayed or unsuccessful. The disorders that can be challenging to diagnose are included in the list below:

  • Pulmonary embolus
  • Spinal cord complication
  • Ischemic bowel
  • Sleep apnea
  • Appendicitis
  • Sepsis

Q: What are some of the rare diseases in India?

A: Rare diseases are lifelong disorders. Thalassemia, Lysosomal storage disorders like Pompe disease and Hirschsprung disease, auto-immune diseases, Cystic fibrosis, Gaucher's disease, Hemangiomas, and specific types of muscular dystrophies are among the rare diseases that often are reported in India.


This article is issued in the general public interest and meant for general information purposes only. Readers are advised not to rely on the contents of the article as conclusive in nature and should research further or consult an expert in this regard.

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