Macedonian Mother Successfully Advocates for World’s First Rare Disease Postage Stamp

This bit of 2017 news flew under the radar! But it’s worth shining a spotlight!

In 2017, Macedonia became the first country in the WORLD to issue a postage stamp depicting a rare disease!

And the story behind this achievement is even better! This bit of history-making achievement was made possible thanks to a mother advocating for her son diagnosed with Alport syndrome; which will come as no surprise to any of our mom readers out there!

What is Alport Syndrome?

Alport syndrome is a rare disease that damages the tiny blood vessels in the kidneys, which can lead to kidney disease and kidney failure. It can also cause hearing loss and problems within the eyes.

Alport syndrome causes damage to the kidneys by attacking the glomeruli, which are the tiny filtering units inside the kidneys.

To learn more about Alport syndrome, click here.

A Mother’s Love — and Fierce Spirit

Gordana Loleska’s son David was 14 years when he was formally diagnosed with Alport syndrome; after suffering from kidney, vision, and hearing problems.

While she took the news hard – she rebounded by becoming a vocal advocate for her son and for the rare disease community as a whole.

Gordana created a Rare Disease Day flag to create awareness; and her friends and supporters even took it to the top of Europe’s highest mountain — Switzerland’s Mount Blanc! Gordana also convinced a Macedonian radio-industry figure into creating a rare disease song!

Talk about dedication and creativity!

But her biggest feat (up till now, anyways) was persuading Macedonia’s postal authorities to issue the world’s first rare disease stamp, commemorating Alport syndrome.

She spent a year researching whether another country had ever issued stamp commemorating the rare disease patient community. None had, so she began a two-year process of persuading postal officials to approve the issue.

And it worked!

Stamp collectors and enthusiasts from all over the world joined Macedonians in buying them — making a great statement for the rare disease community.

The Macedonian Academy of Sciences and Arts even held a gala to kick off sales for the “Rare Disease Day” stamp!

“The idea of a rare disease stamp came to me when I woke up in the middle of the night needing a drink of water,” said Gordana. “From the design to the printing took three months.”

To read more about Gordana and all her advocacy efforts, click here!

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