A Milwaukee brewery is working to raise awareness and money to help people living with rare diseases. The cause is personal for Jonathan Kowalske, one of the owners of Component Brewing in the city’s Bay View neighborhood. Shortly after Kowalske opened the business with his two cousins in 2018, his son Mac was born. Mac was diagnosed with Malan Syndrome. To put in perspective just how rare the condition is, Mac is one of only about 200 people worldwide who have been diagnosed with Malan Syndrome.
Show Your Stripes® for
Rare Disease Day with NORD®
...until Rare Disease Day
RARE Is Not Rare
One out of every 10 Americans is living with a rare disease. Worldwide, there are more than 300 million people with rare diseases. Too often, these individuals and families are left isolated and without answers to their medical questions. It doesn't have to be that way.
Rare Disease Day is a global initiative to raise awareness and generate support for everyone who is on a rare medical journey. It takes place on the last day of February, which this year is February 28th.
The National Organization for Rare Disorders (NORD) is the trusted voice of the more than 30 million Americans living with a rare disease. We are proud to be the official U.S. partner for Rare Disease Day. We invite you to read on to learn how to #ShowYourStripes in support of those with a rare disease.
Faces of Rare
Who do you Show Your Stripes for? We want to hear from you! Behind every face is an extraordinary story and sharing your experience, struggles, and triumphs can help impact change.
In the News
Watch CNBC’s Rare Disease Day interview with NORD President and CEO Peter L. Saltonstall and NORD Rare Disease Center of Excellence Director, Dr. Olaf Bodamer of Boston Children’s Hospital, where they shared how rare disease affects 1 in 10 Americans and why everyone, including the pharmaceutical industry and corporate America, should invest more dollars and attention into rare disease research and treatment.
This time last year, members of Congress were working around the clock to draft and pass the Inflation Reduction Act. One of their goals was to address government spending on health care. But they specifically didn’t want to discourage research into rare disease treatments, so they exempted some of these...