Good day to you PatientWorthians! We can’t express to you just how excited we are to be attending this year’s Rare Disease Day® at the NIH main campus. As laid out on the Rare Disease Day® website, this year’s theme is Patient Voice, making the voice of rare diseases heard.
As experts in bringing out even the quietest of rare disease voices from the fray, this theme resonates with us deeply. With awareness comes action and with action comes a solution, so join us on our journey to Rare Disease Day 2016® in Washington, DC where we will be Tweeting, posting updates on the site and posting pictures on Instagram. If you would like to join us in person make sure to register quickly as deadlines are approaching quickly.
In 2012, Dr. William Gahl, Clinical Director of the National Human Genome Research Institute, gave an interview on 60 Minutes about how difficult it is to live with a rare disease and how often doctors accuse patients of being hypochondriacs. This is what everyone in the rare disease community wants to stop from happening and why it’s so important to riase awareness. It’s the 21st century, the future is now! we live in a time where microchips are being implanted into people’s brains to treat, prevent and/or manage people’s neurological conditions and yet, we have doctors who are less informed now about these rare diseases than the patients who come to them seeking guidance.
