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Meet Carina Imbrogno, a Rare Artist Living with Ehlers-Danlos Syndrome

Meet Carina Imbrogno, a Rare Artist Living with Ehlers-Danlos Syndrome

I was born in 1974 in Buenos Aires, Argentina to Italian immigrants. I was born with a rare genetic disorder called Ehlers-Danlos syndrome kyphoscoliosis type, but it was not diagnosed…

Continue Reading Meet Carina Imbrogno, a Rare Artist Living with Ehlers-Danlos Syndrome
Dosing Begins in Trial of NLY01, a Treatment of Parkinson’s DIsease

Dosing Begins in Trial of NLY01, a Treatment of Parkinson’s DIsease

An issue with current treatments for Parkinson's disease is that they only provide temporary relief from symptoms. There are no therapies that halt or even slow the progression of the…

Continue Reading Dosing Begins in Trial of NLY01, a Treatment of Parkinson’s DIsease
A First for CRISPR: Editing a Gene in the Retinal Cells of a Leber Congenital Amaurosis Patient

A First for CRISPR: Editing a Gene in the Retinal Cells of a Leber Congenital Amaurosis Patient

  NPR News recently featured an article announcing that scientists at Portland’s Casey Eye Institute have attempted to use CRISPR to edit a gene with the DNA still in place.…

Continue Reading A First for CRISPR: Editing a Gene in the Retinal Cells of a Leber Congenital Amaurosis Patient
A Patient With Appendix Cancer was Refused Enrollment in Five Clinical Trials

A Patient With Appendix Cancer was Refused Enrollment in Five Clinical Trials

  Todd Mercer, a fifty-two year old Michigan resident and father of two, recently called into STAT’S Podcast The Readout LOUD to discuss the difficulty he has had getting enrolled…

Continue Reading A Patient With Appendix Cancer was Refused Enrollment in Five Clinical Trials
Ethnobotanical Medicine is Proven to be an Effective Treatment for Lyme Disease

Ethnobotanical Medicine is Proven to be an Effective Treatment for Lyme Disease

Lyme disease is the most common vector-borne disease, and it has become more prominent due to climate change and urban developments spreading further into wooded areas. Treatment is typically effective…

Continue Reading Ethnobotanical Medicine is Proven to be an Effective Treatment for Lyme Disease
Trofinetide Granted Rare Pediatric Disease Designation for the Treatment of Rett Syndrome

Trofinetide Granted Rare Pediatric Disease Designation for the Treatment of Rett Syndrome

ACADIA Pharmaceuticals, working with Neuren Pharmaceuticals, has recently been granted the Rare Pediatric Disease designation from the FDA for their therapy Trofinetide. This drug is intended for the treatment of…

Continue Reading Trofinetide Granted Rare Pediatric Disease Designation for the Treatment of Rett Syndrome
Clinical Trial for Tourette Syndrome Does Not Meet Endpoints

Clinical Trial for Tourette Syndrome Does Not Meet Endpoints

Teva Pharmaceuticals recently finished two clinical trials of their Tourette syndrome treatment, deutetrabenazine. These two studies, titled ARTISTS 1 and ARTISTS 2, did not meet their primary endpoints, as they…

Continue Reading Clinical Trial for Tourette Syndrome Does Not Meet Endpoints
Pancreatic Cancer: Researchers are Calling Patients’ Response to this Treatment “Unprecedented“

Pancreatic Cancer: Researchers are Calling Patients’ Response to this Treatment “Unprecedented“

  The ASCO Post recently reported findings of high response rates and improved survival from the combination of platinum-based cisplatin and gemcitabine (chemotherapy) in BRCA/PALB2 mutation positive pancreatic ductal adenocarcinoma. The goal…

Continue Reading Pancreatic Cancer: Researchers are Calling Patients’ Response to this Treatment “Unprecedented“
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