Rare Disease Day at NIH 2020

Credit: Daniel Soñé Photography

About 7,000 rare diseases affect humans, of which only a few hundred have any treatment. Although each rare disease affects fewer than 200,000 Americans, in total, these illnesses affect an estimated 30 million people in the United States. Since rare diseases often are difficult to diagnose, it can take years to obtain an accurate diagnosis.

As a result, rare diseases are devastating and costly for patients, their families and the nation as a whole. Most rare diseases are serious or life-threatening, chronic and progressive disorders that place substantial medical and financial burdens on patients and their families. Through its work to improve the science of collaboration, NCATS supports collaborative and innovative approaches to research on rare diseases. These efforts have the potential to speed development of treatments for multiple rare diseases and ultimately help more patients more quickly.

NIH ncats_nih_gov ALS kills more people every year than HIV yet gets a fraction of the funding. Veterans are twice as likely to get ALS. EndALS now.

NIH ncats_nih_gov Seeing this, I realized sadly that, even if Trump loses, he & his fellow agents of chaos, like Putin & the GOP, got what they wanted: we doubt even the most innocuous pronouncements from agencies tasked to help & protect US citizens.

NIH ncats_nih_gov Half a million people get sick every year with what you call “LymeDisease” but policy dictates most of them can’t get diagnosed and can’t get treated for the actual disease they end up with, which is post sepsis syndrome, an immune deficiency. LymeAIDS

NIH ncats_nih_gov You’re incompetent and will thousands of deaths on your hands

NIHDirector NIH ncats_nih_gov Sorry I missed this! Adhesion Related Disorder is a disorder that effects 4% of the population in first-world countries, 12% in third-world countries. ONLY USA doesn't recognize while UK, CA, AU, and even third-world countries do! Please help raise awareness especially to docs!

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