Why World Rare Disease Day Matters

By Laura Edwards

There are a million special recognition and awareness “days.” I worked in healthcare for eight years. Many of the patients and families and doctors and nurses and service line leaders I worked with throughout those eight years had a day that was special to them because it recognized not their disease or condition, but the courage and strength it takes to face the disease each day and the determination and belief in miracles it takes to fight for a better tomorrow. Even if some days are so dark you can’t see what’s coming.

February 28 is World Rare Disease Day. It’s not a day for celebrating the fact that one in 10 Americans (and 350 million people worldwide) suffer from a rare disease; it’s a day for coming together as a global community and fighting for a better tomorrow. People like my sister deserve better than this:

  • More than 95% of rare diseases (approximately 7,000) have not one single FDA-approved treatment.
  • During the first 25 years of the Orphan Drug Act (1983), only 326 new drugs were approved by the FDA and brought to market. When we’re talking about thousands of diseases and millions of patients, that just doesn’t cut it.
  • About 30% of children won’t live to see their 5th birthday (and half of people with rare disease are children).

I could go on. Rare disease stinks. People fighting rare disease get a raw deal. And I haven’t even delved into the sheer economic cost to society of treating rare disease symptoms. Our pocketbooks and our patients deserve better. We should be putting money into developing treatments and cures, not figurative Band-Aids and crutches that do little, if anything, to prolong rare disease patients’ quality or length of life. I can’t help but think about the cost of Taylor’s recent visits to the emergency room, hospital stays and surgeries for Batten disease-related symptoms. The total costs were enormous. What if those dollars could have been put toward science that would save her? Because I know that while her doctors and nurses took good care of her, she’s not any closer to surviving the monster that is Batten disease.

There are a million “awareness” days, and every single one of them is important. But over the next month – starting today – and especially on February 28, I’m asking you to commit to learning more about rare disease and sharing our story.

Taylor’s Tale is working hard to do the same. The team is organizing an important event in North Carolina to ignite the conversation on the state level. My mom, Sharon, will go to Capitol Hill to attend Rare Disease Day events and meet with legislators and other decision-makers, as she’s done for the past several years. As for me, I’ll be honoring Taylor and rare disease warriors everywhere with my first out-of-state race of 2015.

This fight continues to get tougher. I know it won’t get any easier. But I’m not quitting anytime soon.

Because rare is everywhere. Rare disease affects us all.

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