.jpg)
A recent article published in Globe Newswire heralded Marinus Pharmaceuticals’ new drug, ganaxolone. The drug has been studied in over 1600 patients and is now being tested in two clinical…
According to a press release from the British biotechnology company GW Pharmaceuticals, the company has reported successful results at the conclusion of its phase 3 trial of tuberous sclerosis complex…
This story comes to us courtesy of a local Rhode Island TV station's "Small But Strong" news feature, highlighting the strength and tenacity of children. 10-year-old Zoie Mercier and her…
The National Health Service (NHS) England is facing criticism following their decision not to fund the drug everolimus as a treatment for tuberous sclerosis complex associated refractory epilepsy. In comparison,…
The story starts in a Ana Alvarez's flat in Lima, Peru. Soon after, Ana will convert this apartment into a marijuana laboratory and underground medical center. The public will largely sympathize…
The FDA makes decisions that determine the lives and treatments of patients with rare diseases. Many of these people who make these decisions aren't impacted by the disease in their…
Elliott Cunnew, from Collaroy, Australia is what you might call a cool dad. Elliot is the father two kids, 20-year-old Amelia, and 17-year-old Lachie. During the day, he sells private…
Causation vs. correlation. What does that even mean? If you ask your friend who majored in philosophy for a semester-and-a-half in college, you’ll probably get an explanation that sounds more…
Announcement is via the Child Neurology Foundation, republished here with permission: NOMINATIONS NOW ACCEPTED FOR: IS HOPE AND IS HEROES AWARDS The Infantile Spasms Action Network will once again sponsor Infantile…
Learning as much as you can about your diagnosis is the first step toward empowering yourself to take control of your life and make decisions that will help you live…
Abigail, a fifth grade student, originally took a trip to the Capitol to advocate for more research on tuberous sclerosis complex (TSC). The trip had unexpected results. As the Daily…
I was once walking through an outdoor festival near my hometown. There was a band playing off in the distance, but I didn’t know them or the song they were…
Kelley Fox is 23 years old, but developmentally she’s only around 5 or 6 years old. She lost half of her brain due to a disorder called tuberous sclerosis. The…
TSC stands for tuberous sclerosis complex. Often times, it is known as tuberous sclerosis. What is TSC? Tuberous sclerosis complex is a rare genetic disease that can affect multiple areas of…
Think all those fundraising walks you see advertised don't help? Think again! Shelly Meitzer, the mother of two children with tuberous sclerosis complex (TSC), a rare multi-system genetic disorder, has…
Tuberous sclerosis complex (TSC) is a rare genetic disease. It causes tissue to form abnormally in patients at a young age. Different organs are affected by it, meaning that symptoms…
Your child’s health care is important. Finding the right care is not always easy, especially when it comes to finding tuberous sclerosis complex care. Tuberous sclerosis complex (TSC) is a…
It’s always exciting when the Food and Drug Administration (FDA) gives a new drug its approval, especially for rare diseases like tuberous sclerosis complex (TSC). This is the culmination of…
Some people can manage tuberous sclerosis complex (TSC) with their doctors for years using a watch-and-wait approach until the last and best option—surgery—becomes necessity. By using the watch-and-wait method, a…
Every year, actually every day, the FDA and similar organizations for other countries approve new medicines. Innumerable pharmaceutical companies work tirelessly for years to research, develop, test, distribute, and market…
May 15th is TSC Global Awareness Day! Tuberous Sclerosis Complex (TSC) is defined as an inherited disorder that causes tumors to develop in vital organs. One million people worldwide are…
Approximately one million people worldwide have been diagnosed with tuberous sclerosis complex (TSC), a condition where non-cancerous tumors and other lesions grow most commonly in the kidneys, heart, lungs, skin and…
The On Tap for TS event is Saturday April 1, 2017 from 4 - 8 pm to benefit tuberous sclerosis complex (TSC) and autism research. It will be at BadWolf…
The Tuberous Sclerosis Alliance works to bring awareness to tuberous sclerosis complex (TSC). They also work to raise funds for TSC. Over the years, some of the greatest in the…
“Sound Bites, An Evening of Food, Wine and Music” is TONIGHT! The event is at the National Press Club in Washington, DC. It begins at 6:00 pm with appetizers and wine…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
