Congenital Ichthyosis and Tuberous Sclerosis Complex Clinical Trials are Now Enrolling Patients
source: pixabay.com

Congenital Ichthyosis and Tuberous Sclerosis Complex Clinical Trials are Now Enrolling Patients

Timber Pharmaceuticals focuses on rare diseases of dermatologic origin. These include scleroderma, congenital ichthyosis, tuberous sclerosis complex, and facial angiofibromas. They are currently working on two clinical trials. Trial 1…

Continue Reading Congenital Ichthyosis and Tuberous Sclerosis Complex Clinical Trials are Now Enrolling Patients

Rare Epilepsy Updates:  One New Drug, Two Clinical Trials, and Orphan Drug Designation

  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…

Continue Reading Rare Epilepsy Updates:  One New Drug, Two Clinical Trials, and Orphan Drug Designation
Positive Results at End of Phase 3 Trial of Candidate Tuberous Sclerosis Complex Drug – CBD
cbd123 / Pixabay

Positive Results at End of Phase 3 Trial of Candidate Tuberous Sclerosis Complex Drug – CBD

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…

Continue Reading Positive Results at End of Phase 3 Trial of Candidate Tuberous Sclerosis Complex Drug – CBD
Child With Tuberous Sclerosis Complex Organizes Toy Drive For Children’s Hospital
FeeLoona / Pixabay

Child With Tuberous Sclerosis Complex Organizes Toy Drive For Children’s Hospital

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…

Continue Reading Child With Tuberous Sclerosis Complex Organizes Toy Drive For Children’s Hospital
Patient Activists are Speaking Out After NHS England Decided Not to Fund a Drug to Treat TSC-Associated Epilepsy
https://pixabay.com/en/child-girl-face-expression-view-632602/

Patient Activists are Speaking Out After NHS England Decided Not to Fund a Drug to Treat TSC-Associated Epilepsy

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,…

Continue Reading Patient Activists are Speaking Out After NHS England Decided Not to Fund a Drug to Treat TSC-Associated Epilepsy
Mother’s Underground Marijuana Lab Leads to Legislative Change in Peru
source: pixabay.com

Mother’s Underground Marijuana Lab Leads to Legislative Change in Peru

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…

Continue Reading Mother’s Underground Marijuana Lab Leads to Legislative Change in Peru

Become Part of the Project That Could Save Lives from Genetic Disorders

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…

Continue Reading Become Part of the Project That Could Save Lives from Genetic Disorders
Young Student with TSC Inspires Congressman on Trip to Capitol
https://pixabay.com/en/united-states-capitol-politics-1675539/

Young Student with TSC Inspires Congressman on Trip to Capitol

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…

Continue Reading Young Student with TSC Inspires Congressman on Trip to Capitol
Impact of Tuberous Sclerosis Complex Fundraising
https://pixabay.com/en/donate-today-rectangle-isolated-1331096/

Impact of Tuberous Sclerosis Complex Fundraising

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…

Continue Reading Impact of Tuberous Sclerosis Complex Fundraising
How TSC Trumps Murphy’s Law When it Comes to Parenting
https://pixabay.com/en/doll-s-house-figurines-macro-1473948/

How TSC Trumps Murphy’s Law When it Comes to Parenting

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…

Continue Reading How TSC Trumps Murphy’s Law When it Comes to Parenting
You’ll Feel All the Feels for TSC Parenting Decisions
https://pixabay.com/en/mother-and-baby-pm-let-go-1648866/

You’ll Feel All the Feels for TSC Parenting Decisions

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…

Continue Reading You’ll Feel All the Feels for TSC Parenting Decisions
People with Tuberous Sclerosis Complex May Have New Hope
https://pixabay.com/en/hope-word-letters-scrabble-1804595/

People with Tuberous Sclerosis Complex May Have New Hope

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…

Continue Reading People with Tuberous Sclerosis Complex May Have New Hope
What Are You Doing for Tuberous Sclerosis Complex Awareness Day?
https://pixabay.com/en/hand-world-ball-keep-child-earth-644145/

What Are You Doing for Tuberous Sclerosis Complex Awareness Day?

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…

Continue Reading What Are You Doing for Tuberous Sclerosis Complex Awareness Day?
This Doctor with Tuberous Sclerosis is Also a Patient in Need of a Kidney
https://pixabay.com/en/facebook-internet-network-social-1903445/

This Doctor with Tuberous Sclerosis is Also a Patient in Need of a Kidney

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…

Continue Reading This Doctor with Tuberous Sclerosis is Also a Patient in Need of a Kidney
Close Menu