Do you know anyone with a rare disease? You probably do. There are about 11,000 known rare disorders in the world, affecting at least 300 million people, including 30 million Americans.

February 28 is Rare Disease Day (rarediseaseday.org) worldwide. Here are some basic facts:

• A rare disease is defined as one affecting fewer than 200,000 people.

• More than half of those affected are children.

• 95% of these diseases have no FDA-approved treatments or cures.

• 85% have a genetic origin, either random or hereditary.

• 70% start in childhood but often are not diagnosed until much later, if at all.

• 65% of rare diseases lead to a reduced lifespan.

Even so, the National Institutes of Health (NIH), which is responsible for all government-sponsored research, allocates only about 2% of its research budget toward rare diseases.

Meanwhile, major pharmaceutical companies direct most of their funding toward mainstream cancer and other illnesses — although rare disorders affect more people than all forms of cancer and AIDS combined.

As a result, the development of treatments for rare disorders is left largely to parent-led patient advocacy organizations. Fortunately, we have two such groups right here in our community.

Two Mercer Island women — “Rare Mamas” as they call themselves — are working hard to raise public awareness and to increase funds for medical research on treatments and possible cures. They are:

• Effie Parks, whose 6-year-old son Ford who has CTNNB1 Syndrome, a neurodevelopmental disorder that affects all aspects of his growth and limits his ability to speak, walk, and swallow, so he is fed with a g-tube. He is one of only about 400 in the world currently diagnosed with that disorder.

• Jill Hawkins, whose daughter Charlotte, 17, and son Cooper, 12, both have FAM177A1 Disorder. This is a recently discovered neurodevelopmental disease with neurodegenerative features. It causes global developmental delays, seizures, behavior disturbance, progressive motor challenges, arthritis and frequent infections. There are only 15 identified patients in the world.

Together, these two dynamic and dedicated mothers have formed a strong bond over the last few years.

They are leading the effort to help their own and other families deal with their children’s medical complexities. It’s a challenging task that has in many ways taken over their lives.

Two years ago on Rare Disease Day (RDD), they partnered with many Mercer Island businesses to distribute zebra-striped masks and organized an event on Mercer Island’s Lid Park that drew about 100 people and was covered by the Mercer Island Reporter.

Many of those who attended wore black-and-white striped masks or zebra-striped clothing because the symbol of RDD is the zebra and the global theme is “Show Your Stripes.”

This year, the two women are hosting a “Rare Soiree,” an auction and cocktail party whose attendees are also invited to wear zebra stripes, at the Yuan Ru Art Center in Bellevue. The event is already sold out.

This space was donated by gallery owner Julie Yuan-Ru Hsieh, a Mercer Island resident. The Small Bandits, a Mercer Island duo, will perform live music.

Donated artworks, items or experiences will be auctioned off by emcee Matt Lorch, local journalist and professional storyteller, and himself father of a child with special needs. Online donations are welcome and can be made by texting the word RARE to 53555 or at givebutter.com/c/ARareSoiree23. Proceeds will support the missions of CTNNB1 Connect & Cure and the FAM177A1 Research Fund.

They are also encouraging all Mercer Island citizens to “Show Your Stripes” that day by wearing zebra garb.

Mayor Salim Nice and the Mercer Island City Council approved a proclamation declaring Feb. 28 as Rare Disease Day, urging public participation. MI Schools Superintendent Fred Rundle donned a zebra costume to film a video to show to school board members, families, and students.

Another thing that homeowners and businesses can do is “Light Up for Rare” by shining colored lights or displaying lanterns — green, pink, purple and blue — on your home or office building at 7 p.m. Feb. 28.

Since Rare Disease Day first started in Europe in 2008, it has become a global campaign and spread to more than 100 countries.

Among the sites always lighted up are the Empire State Building, Times Square, the Tower of Pisa, the Roman Colosseum, and the Australian Parliament.

If lights are not feasible, you can hang banners, posters, or colored paper in your windows.

Facebook, Instagram and other social media can be used to spread the word. Videos are available to watch and share.

For details on the worldwide campaign, see rarediseaseday.org.

In this country, the National Organization for Rare Disorders (NORD) (rarediseases.org) and Global Genes (globalgenes.org) are two umbrella organizations that bring together the many small groups that address specific diseases such as CTNNB1 (www.curectnnb1.org) and FAM177A1 (www.fam177a1.org).

“Rare is Many. Rare is Strong. Rare is Proud.” That’s the RDD motto, and words to live by.

Mercer Island resident John Hamer is a retired editorial writer and columnist for The Seattle Times as well as grandfather of Ford Parks. His daughter-in-law, Effie Parks (effieparks.com), works part-time for Global Genes, and she and John’s wife, Mariana Parks, are board members of CTNNB1 Connect & Cure. Email jhamer46@gmail.com.