Rare Disease Day 2017

On February 28, Rare Disease Day, Gabe Grunewald shared both her experience and valuable information to shed light on this cause.

from Gabe’s Instagram

Today is Rare Disease Day 2017. I celebrated with my first outdoor track workout of the year here in beautiful Santa Barbara! ☀️ I’m just one of many people hoping to raise awareness about rare diseases and their impact on patients’ lives, aiming to educate the public on the unique challenges facing millions of Americans. Many of you may know I have survived cancer three times, but maybe aren’t aware of the fact that my cancer is classified as a rare disease — making both information about it and treatment more difficult to find. Want to learn more or have I lost you? If not, read on!

• A rare disease is one that affects fewer than 200,000 people in the US.
• There are about 7,000 known rare diseases affecting 30 million Americans.
• 50% of rare diseases affect children.
• 95% of rare diseases do not have one single FDA-approved therapy.
• My rare disease, Adenoid Cystic Carcinoma, is a rare malignancy of the secretory glands, usually originating in salivary glands (like mine), but can appear in other primary sites.
• There are approximately 1,200 new cases of ACC diagnosed each year in the US, 60% of which involve women.
• There are often no existing effective cures for rare diseases, which is the case for ACC.
• There is a lack of scientific knowledge and quality information about many rare diseases, with patients relying on nonprofit organizations to advocate and secure funding for clinical trials and advanced research.

At age 30, I am coming to terms with what it means to live with a rare disease. I feel lucky to continue to train & run, knowing at any moment that could change. And millions of others are in this same, shaky boat. In need of more research & more cures. If you’re compelled, many rare disease organizations and foundations need support — National Organization for Rare Diseases (NORD) is a great resource and much-needed advocate. ❤️ [rarediseases.org]

Alone we are rare. Together we are strong.

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