Healthcare
Infographic: Which Rare Diseases Are The Most Common?
Infographic: Which Rare Diseases Are The Most Common?
Pharmaceuticals have come a long way since the apothecary days of prescribing cocaine drops for toothaches, or dispensing tapeworm diet pills.
Today, medical breakthroughs like antibiotics and vaccines save millions of lives, and contribute to the industry’s mammoth size. Yet even with rapid advancements, a select group of rare diseases still fly under the radar — and together, they affect over 350 million people worldwide.
What Are Rare Diseases?
Today’s infographic from Raconteur breaks down occurrence rates of notable rare diseases, and their collective impact on pharmaceutical drug sales. But first, let’s look at how they’re defined.
Diseases are considered rare, or “orphan” if they affect only a small proportion of the population. In general, it’s estimated that 1 in 17 people will be afflicted by a rare disease in their lifetime. At the same time, as many as 7,000 rare diseases exist, with more discovered every year.
A report by the global investment bank Torreya looks at the most common types of rare diseases that are a focus for therapeutic companies around the world:
- Multiple sclerosis emerges above all others, at 90 patients per 100,000 people.
- Narcolepsy—intermittent, uncontrollable episodes of sleepiness—affects 50 patients per 100,000.
- Primary biliary cholangitis, the damage of bile ducts in the liver, affects 40 people in 100,000.
- Rounding out the top five orphan diseases are Fabry disease (30 patients per 100,000), and cystic fibrosis (25 patients per 100,000).
One catch behind these stats? There’s actually no universal definition of what constitutes a rare disease. This means prevalence data like the above is often inconsistent, making it difficult to record the precise rate of natural occurrence.
The Cost of Rare Diseases
This gap in knowledge comes at a price—many rare diseases have constrained options for treatment. Orphan drugs are often commercially underdeveloped, as their limited end-market usage means they aren’t usually profitable enough for traditional research.
In the United States, government-backed incentives such as tax credits for R&D costs and clinical trials are speeding up the pathways from drug to market. Other places like the EU, Japan, and Australia are also following suit.
In total, it’s estimated that pharma companies focused on rare diseases are worth about half a trillion in enterprise value, roughly equal to 17.5% of the value of Big Pharma:
- Non-oncology value: $315.7B
- Oncology value: $193.1B
- Total enterprise value: $508.8B
Source: Torreya Report. Market values are for the top 31 pure play rare disease therapeutic companies.
The average cost of an orphan drug per U.S. patient annually can climb to near $151,000 (a whopping 4.5 times that of a non-orphan drug, at $34,000). That’s why the pharma industry is urgently advancing rare disease therapeutics across different categories.
Dominant Orphan Drug Sales
According to other estimates, orphan drugs are set to capture over one-fifth of global prescription sales by 2024. Blood, central nervous system, and respiratory-related drugs are currently the top therapeutic categories and are expected to keep this status into the future.
The figures below break down global orphan drug sales by therapy category, and their present and estimated future market share. Note that oncology-related orphan drug sales are excluded from this table.
Therapy Category | 2018 Sales | Market Share | 2024E Sales | Market Share | Change in Market Share |
---|---|---|---|---|---|
Blood | $21.3B | 31.4% | $33.1B | 27.9% | -3.4% |
Central nervous system (CNS) | $11.1B | 16.3% | $20.3B | 17.1% | 0.8% |
Respiratory | $7.8B | 11.5% | $13.6B | 11.5% | 0% |
Immunomodulators | $7B | 10.3% | $12.5B | 10.5% | 0.2% |
Cardiovascular | $6.7B | 9.9% | $8.5B | 7.2% | -2.7% |
Endocrine | $3.8B | 5.6% | $5.6B | 4.7% | -0.9% |
Musculoskeletal | $3.5B | 5.2% | $11B | 9.3% | 4.1% |
Systemic anti-infectives | $3.1B | 4.6% | $4.2B | 3.5% | -1% |
Gastro-intestinal | $2.9B | 4.3% | $6B | 5.1% | 0.8% |
Genito-urinary | $0.6B | 0.9% | $1.5B | 1.3% | 0.4% |
Sensory organs | $0.1B | 0.1% | $1.5B | 1.3% | 1.1% |
Dermatology | $0B | 0% | $0.7B | 0.6% | 0.6% |
Total Sales | $67.9B | $118.5B |
Source: EvaluatePharma. Industry sales are based on the top 500 pharma and biotech companies.
Much is still unknown about rare diseases in the health community. Frequent misdiagnosis, and up to an average of 8 years for an accurate diagnosis, continue to be a problem for patients.
There are two sides to the situation. On one, tech giants like Microsoft are providing digital health solutions to speed up diagnosis, through machine learning and blockchain-based patient registry.
On the other, many skeptics question whether the industry is interested in finding cures for rare diseases at all, especially when they account for a significant portion of industry revenues.
Is curing patients a sustainable business model?
Healthcare
Charted: Average Years Left to Live by Age
Visualizing the number of years left to live for Americans at every age, reveals the broader trends in American life expectancy.

How Many Years Do You Have Left to Live?
At the start of the 19th century, when there fewer than 1 billion humans on the earth, global life expectancy at birth stood at roughly 29 years.
This is a startlingly low figure—because life expectancy is a statistical projection of how many more years a person can expect to live, based on the mortality rates at the time. And since the infant mortality rate in particular was so high, life expectancies accurately summarized the low likelihood of many babies living to adulthood.
However, since the 1920s, life expectancy across all ages has improved leaps and bounds, thanks to rapid advancements in nutrition, healthcare, and sanitation.
We visualized the current American life expectancy by age and gender, using data from the Office of Social Security, which bases their current projections on 2020 mortality rates.
American Life Expectancy at Every Age
A key takeaway with life expectancy is that it increases as one gets older. This is easily seen in the table below, which lists the remaining years left to live at a given age for an American male and the projected life expectancy.
Age | Years Remaining (Men) | Life Expectancy (Men) |
---|---|---|
0 | 74.12 | 74.12 |
1 | 73.55 | 74.55 |
2 | 72.58 | 74.58 |
3 | 71.60 | 74.60 |
4 | 70.62 | 74.62 |
5 | 69.63 | 74.63 |
6 | 68.64 | 74.64 |
7 | 67.65 | 74.65 |
8 | 66.65 | 74.65 |
9 | 65.66 | 74.66 |
10 | 64.67 | 74.67 |
11 | 63.68 | 74.68 |
12 | 62.69 | 74.69 |
13 | 61.70 | 74.70 |
14 | 60.71 | 74.71 |
15 | 59.73 | 74.73 |
16 | 58.76 | 74.76 |
17 | 57.79 | 74.79 |
18 | 56.84 | 74.84 |
19 | 55.90 | 74.90 |
20 | 54.97 | 74.97 |
21 | 54.04 | 75.04 |
22 | 53.12 | 75.12 |
23 | 52.21 | 75.21 |
24 | 51.30 | 75.30 |
25 | 50.39 | 75.39 |
26 | 49.48 | 75.48 |
27 | 48.57 | 75.57 |
28 | 47.66 | 75.66 |
29 | 46.76 | 75.76 |
30 | 45.86 | 75.86 |
31 | 44.97 | 75.97 |
32 | 44.07 | 76.07 |
33 | 43.18 | 76.18 |
34 | 42.29 | 76.29 |
35 | 41.39 | 76.39 |
36 | 40.50 | 76.50 |
37 | 39.62 | 76.62 |
38 | 38.73 | 76.73 |
39 | 37.85 | 76.85 |
40 | 36.97 | 76.97 |
41 | 36.09 | 77.09 |
42 | 35.21 | 77.21 |
43 | 34.34 | 77.34 |
44 | 33.46 | 77.46 |
45 | 32.59 | 77.59 |
46 | 31.73 | 77.73 |
47 | 30.87 | 77.87 |
48 | 30.01 | 78.01 |
49 | 29.17 | 78.17 |
50 | 28.33 | 78.33 |
51 | 27.50 | 78.50 |
52 | 26.67 | 78.67 |
53 | 25.86 | 78.86 |
54 | 25.06 | 79.06 |
55 | 24.27 | 79.27 |
56 | 23.48 | 79.48 |
57 | 22.71 | 79.71 |
58 | 21.95 | 79.95 |
59 | 21.21 | 80.21 |
60 | 20.47 | 80.47 |
61 | 19.74 | 80.74 |
62 | 19.03 | 81.03 |
63 | 18.32 | 81.32 |
64 | 17.63 | 81.63 |
65 | 16.94 | 81.94 |
66 | 16.26 | 82.26 |
67 | 15.58 | 82.58 |
68 | 14.91 | 82.91 |
69 | 14.24 | 83.24 |
70 | 13.59 | 83.59 |
71 | 12.94 | 83.94 |
72 | 12.30 | 84.30 |
73 | 11.67 | 84.67 |
74 | 11.05 | 85.05 |
75 | 10.46 | 85.46 |
76 | 9.88 | 85.88 |
77 | 9.32 | 86.32 |
78 | 8.77 | 86.77 |
79 | 8.25 | 87.25 |
80 | 7.74 | 87.74 |
81 | 7.25 | 88.25 |
82 | 6.77 | 88.77 |
83 | 6.31 | 89.31 |
84 | 5.88 | 89.88 |
85 | 5.47 | 90.47 |
86 | 5.07 | 91.07 |
87 | 4.70 | 91.70 |
88 | 4.35 | 92.35 |
89 | 4.02 | 93.02 |
90 | 3.72 | 93.72 |
91 | 3.44 | 94.44 |
92 | 3.18 | 95.18 |
93 | 2.96 | 95.96 |
94 | 2.75 | 96.75 |
95 | 2.57 | 97.57 |
96 | 2.42 | 98.42 |
97 | 2.28 | 99.28 |
98 | 2.15 | 100.15 |
99 | 2.04 | 101.04 |
100 | 1.93 | 101.93 |
101 | 1.83 | 102.83 |
102 | 1.73 | 103.73 |
103 | 1.63 | 104.63 |
104 | 1.54 | 105.54 |
105 | 1.45 | 106.45 |
106 | 1.36 | 107.36 |
107 | 1.27 | 108.27 |
108 | 1.18 | 109.18 |
109 | 1.10 | 110.10 |
110 | 1.02 | 111.02 |
111 | 0.95 | 111.95 |
112 | 0.88 | 112.88 |
113 | 0.82 | 113.82 |
114 | 0.76 | 114.76 |
115 | 0.70 | 115.70 |
116 | 0.65 | 116.65 |
117 | 0.60 | 117.60 |
118 | 0.56 | 118.56 |
119 | 0.52 | 119.52 |
120 | 0.48 | 120.48 |
At birth, an average American baby boy can expect to live till just past 74. But if the boy reaches adulthood, then at 21 he might live to a full year more, past 75. This trend persists even towards the end of life when the years we have left drop rapidly, influenced by the higher likelihood of death.
American women, on the other hand, have a higher life expectancy than men. At birth the gap is close to six years, narrowing steadily to around one year by 85.
Age | Years Remaining (Women) | Life Expectancy (Women) |
---|---|---|
0 | 79.78 | 79.78 |
1 | 79.17 | 80.17 |
2 | 78.19 | 80.19 |
3 | 77.21 | 80.21 |
4 | 76.22 | 80.22 |
5 | 75.23 | 80.23 |
6 | 74.24 | 80.24 |
7 | 73.25 | 80.25 |
8 | 72.25 | 80.25 |
9 | 71.26 | 80.26 |
10 | 70.27 | 80.27 |
11 | 69.27 | 80.27 |
12 | 68.28 | 80.28 |
13 | 67.29 | 80.29 |
14 | 66.30 | 80.30 |
15 | 65.31 | 80.31 |
16 | 64.32 | 80.32 |
17 | 63.34 | 80.34 |
18 | 62.36 | 80.36 |
19 | 61.38 | 80.38 |
20 | 60.41 | 80.41 |
21 | 59.44 | 80.44 |
22 | 58.47 | 80.47 |
23 | 57.50 | 80.50 |
24 | 56.54 | 80.54 |
25 | 55.58 | 80.58 |
26 | 54.61 | 80.61 |
27 | 53.66 | 80.66 |
28 | 52.70 | 80.70 |
29 | 51.74 | 80.74 |
30 | 50.79 | 80.79 |
31 | 49.84 | 80.84 |
32 | 48.89 | 80.89 |
33 | 47.94 | 80.94 |
34 | 47.00 | 81.00 |
35 | 46.06 | 81.06 |
36 | 45.12 | 81.12 |
37 | 44.18 | 81.18 |
38 | 43.24 | 81.24 |
39 | 42.31 | 81.31 |
40 | 41.38 | 81.38 |
41 | 40.45 | 81.45 |
42 | 39.52 | 81.52 |
43 | 38.60 | 81.60 |
44 | 37.68 | 81.68 |
45 | 36.76 | 81.76 |
46 | 35.85 | 81.85 |
47 | 34.94 | 81.94 |
48 | 34.04 | 82.04 |
49 | 33.14 | 82.14 |
50 | 32.24 | 82.24 |
51 | 31.35 | 82.35 |
52 | 30.47 | 82.47 |
53 | 29.59 | 82.59 |
54 | 28.72 | 82.72 |
55 | 27.86 | 82.86 |
56 | 27.01 | 83.01 |
57 | 26.16 | 83.16 |
58 | 25.32 | 83.32 |
59 | 24.49 | 83.49 |
60 | 23.67 | 83.67 |
61 | 22.85 | 83.85 |
62 | 22.04 | 84.04 |
63 | 21.24 | 84.24 |
64 | 20.45 | 84.45 |
65 | 19.66 | 84.66 |
66 | 18.88 | 84.88 |
67 | 18.10 | 85.10 |
68 | 17.34 | 85.34 |
69 | 16.58 | 85.58 |
70 | 15.82 | 85.82 |
71 | 15.08 | 86.08 |
72 | 14.36 | 86.36 |
73 | 13.64 | 86.64 |
74 | 12.94 | 86.94 |
75 | 12.26 | 87.26 |
76 | 11.60 | 87.60 |
77 | 10.95 | 87.95 |
78 | 10.31 | 88.31 |
79 | 9.70 | 88.70 |
80 | 9.10 | 89.10 |
81 | 8.53 | 89.53 |
82 | 7.98 | 89.98 |
83 | 7.44 | 90.44 |
84 | 6.93 | 90.93 |
85 | 6.44 | 91.44 |
86 | 5.99 | 91.99 |
87 | 5.55 | 92.55 |
88 | 5.15 | 93.15 |
89 | 4.76 | 93.76 |
90 | 4.41 | 94.41 |
91 | 4.08 | 95.08 |
92 | 3.78 | 95.78 |
93 | 3.51 | 96.51 |
94 | 3.27 | 97.27 |
95 | 3.05 | 98.05 |
96 | 2.85 | 98.85 |
97 | 2.68 | 99.68 |
98 | 2.52 | 100.52 |
99 | 2.37 | 101.37 |
100 | 2.23 | 102.23 |
101 | 2.09 | 103.09 |
102 | 1.96 | 103.96 |
103 | 1.84 | 104.84 |
104 | 1.72 | 105.72 |
105 | 1.61 | 106.61 |
106 | 1.51 | 107.51 |
107 | 1.41 | 108.41 |
108 | 1.32 | 109.32 |
109 | 1.24 | 110.24 |
110 | 1.16 | 111.16 |
111 | 1.09 | 112.09 |
112 | 1.02 | 113.02 |
113 | 0.96 | 113.96 |
114 | 0.90 | 114.90 |
115 | 0.85 | 115.85 |
116 | 0.80 | 116.80 |
117 | 0.75 | 117.75 |
118 | 0.70 | 118.70 |
119 | 0.66 | 119.66 |
120 | 0.62 | 120.62 |
Interestingly, women outlive men in nearly every country in the world, due to a mix of sociological, behavioral, and biological reasons.
COVID-19: Reversing A Decade of Increasing American Life Expectancy
While the current American life expectancy at birth seems reasonably high, it is nearly two years lower than the 2022 figure which used the 2019 mortality rate. It is also lower than the life expectancy at birth in 2009, which used 2005 mortality rate.
Year | Life Expectancy at Birth (Men) | Life Expectancy at Birth (Women) |
---|---|---|
2009 | 74.12 | 79.95 |
2014 | 76.10 | 80.94 |
2019 | 76.04 | 80.99 |
2023 | 74.12 | 79.78 |
American mortality rates went up 17% between 2019–2020, in part because of COVID-19, in turn affecting life expectancy. The U.S. also had a higher COVID-19 mortality rate compared to its peers two years after the pandemic first struck.
Thus, American life expectancy may not improve immediately to 2019 levels, which can affect insurance premiums, pension benefits, and plans.
Where Does This Data Come From?
Source: Office of Social Security, U.S. Government.
Note: The life expectancy at a given age is the average remaining number of years expected prior to death for a person at that exact age, born on January 1, using the mortality rates for 2020 over the course of their remaining life.
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