Rare stamps for rare diseases

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All health systems are designed to take care of common ailments. Postage stamps also pick up only those health themes, that are common. To put in numbers, diabetes and hypertension are common. Today, these conditions affect as many as 1 or 2 of every 10 adults respectively. Some other health ailments are even more common, for instance every 7-9 of 10 older persons have a cataract). Infections, though less common are a public health concern, For instance in India, HIV affects about 3 in 1000, and 1 out of every 1000 develops TB every year. All the above health concerns are also common in postage stamps. So do we have space to bother about rare ?

How rare is rare ?

There is no single benchmark for a disease to be rare. Most liberal definition puts it at less than 1 in 2000. Other more stringent ones call it rare when it is between 1 or 7.5 per 10,000. As more than 5000 diverse diseases meet this definition, a collective of rare becomes common. Some activists estimate this collective to be more than 300million, most of whom will probably never know about it.

So I was pleasantly surprised to find my first rare-disease postage stamp. In current era of Whattsapp, I am on a handful of philately groups. It is here I found my first one on ichthyosis – an uncommon disease where skin becomes as scaly as a fish. A tiny country of North Macedonia, issued this stamp in February 2023.

North Macedonia and Rare disease postage stamps

Today, North Macedonia is a tiny country of less than 20 Lakh people. About 2400 years ago, Alexender was a king of Macedonia, when he embarked on a global conquest. Over the years, the region was ruled by the Greeks, Romans, Ottomons, Bulgarians, and the Yugoslavs.
In 1991, Macedonia separated from Yugoslavia. Greeks did not like a country with same name as its own province. So from 1993 to 2018, country was FYR Macedonia (FYR for ‘former Yugoslav republic of’). In 2019 it finally settled for North Macedonia as its name. Three names in less than two decades is also unusual for a country.

Gordana Loleska, a postal worker in Macedonia has three children. David, her youngest has Alport disease, a rare genetic condition that affects kidneys, hearing and vision. After a two year campaign, in 2017 Gordana could convince her country’s postal department to issue a rare disease postage stamp. This was the first such stamp by any country in the world. Internet image of this stamp is provided below, and I hope to find this one in person some day.

Gordana continued her activism. Her country came with another rare disease postage stamp in 2019. This time on Alport’s syndrome – a disease that had affected her son. Another internet image below of this 2019 stamp.

Stamps become a movement in North Macedonia

North Macedonia’s postal department has proved that a small country can have a large global footprint. While the rare disease movement officially started in Macedonia in the year 2013, after 2021 it has been picked up by its political leadership. The country issued a third rare disease postage stamp in 2021. This time the stamp was on Gaucher’s disease. This is a disease where abnormal lipids start collecting in liver and spleen.

Rare disease postage issues are now an annual event. I am one of the proud owners of its 2022 postage stamp that was issued by the first lady Elizabeta Gjorgievska. It features a rare skin condition with large blisters – Epidermolysis bullosa.

So with two in my kitty, philatelist in me is waiting for the previous ones I missed, and hopefully there will be another North Macedonian stamp in 2024.

Rare disease movement and its day

A sad metaphor for rare diseases was “orphan conditions“. So few individuals had a disease, that it never got attention. If at-all any medicines were of use, no manufacturer would make them. Thus, we had some “orphan drugs” useful but with no takers. These concerns of many families with rare diseases, were lost in the “common disease forest.” In 1983, a group of patients with rare diseases formed National Organization of Rare diseases or NORD. They came up with a slogan “alone we are rare, but together we are strong“. A large database of rare diseases and its remedies still carries a sad metaphor “orphanet“.

In 2008 some European organisations choose last day of February as a day for rare diseases. This date in 2008 was 29th February. Rare disease had to be on a rare date. Since then the movement has grown to more than 100 countries now. Since most rare diseases are genetic, they usually present in early years of life. Thus focus is on identifying them in children, and trying to find its remedies.

While NORD has turned 40, Indian efforts are more recent. We have about 10000 registered patients who have one of the 300 listed conditions. Further, these are grouped based on feasibility of treatment options. Availability, cost, and feasibility of treatments all have their challenges. As we are near yet another “rare disease day” it seems like a new-path in the grass. Many will need to tread it, and more so often. Only when grass flattens, and path widens, more will be able to reach the idyllic world of rare disease cures.