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Years Later, Families in England are Still Fighting for NHS Coverage of Batten Disease Drug

Years Later, Families in England are Still Fighting for NHS Coverage of Batten Disease Drug

Families in England affected by Batten disease are struggling to access effective treatments in their home country. Nicole and Jessica Rich are two young girls who live with their families…

Continue Reading Years Later, Families in England are Still Fighting for NHS Coverage of Batten Disease Drug
First Patient Enrolled in Pediatric Tourette’s Syndrome Clinical Trial

First Patient Enrolled in Pediatric Tourette’s Syndrome Clinical Trial

According to a story from BioPortfolio, the biopharmaceutical company Emalex Biosciences, Inc., has recently announced that the very first patient has been signed up for the company's phase 2b clinical…

Continue Reading First Patient Enrolled in Pediatric Tourette’s Syndrome Clinical Trial
Editor’s Choice: Studies, Policies, and Grants

Editor’s Choice: Studies, Policies, and Grants

Happy Thursday! This week, we're highlighting an article about the neglect of policies meant to protect people with IBD. Next, we have stories on two recent studies affecting MS and…

Continue Reading Editor’s Choice: Studies, Policies, and Grants
A Potential Treatment for Familial Chylomicronemia Syndrome Performs Well in Trials

A Potential Treatment for Familial Chylomicronemia Syndrome Performs Well in Trials

According to a story from EurekAlert!, the results of a recent clinical trial should get the attention of patients in the US with the rare disorder familial chylomicronemia syndrome. The…

Continue Reading A Potential Treatment for Familial Chylomicronemia Syndrome Performs Well in Trials
The Drug Concizumab Appears Effective in Both Hemophilia A and B

The Drug Concizumab Appears Effective in Both Hemophilia A and B

According to a story from MD Edge, a phase 2 clinical trial testing the drug concizumab as a treatment for hemophilia A and hemophilia B demonstrated substantial capability in reducing…

Continue Reading The Drug Concizumab Appears Effective in Both Hemophilia A and B
As the Rate of Ulcerative Colitis Diagnoses Grows, its Clear More Research is Needed

As the Rate of Ulcerative Colitis Diagnoses Grows, its Clear More Research is Needed

Inflammatory Bowel Disease Inflammatory bowel disease (IBD) is actually a term used to classify a few different conditions. Two of these are Crohn's disease and ulcerative colitis.  These are rare…

Continue Reading As the Rate of Ulcerative Colitis Diagnoses Grows, its Clear More Research is Needed
Independent Data Review Gives Go-Ahead for Rett Syndrome Clinical Trial

Independent Data Review Gives Go-Ahead for Rett Syndrome Clinical Trial

According to a story from Financial Buzz, the biopharmaceutical company Anavex Life Sciences Corp. has recently announced that the Independent Data Safety Monitoring Board (DSMB) has completed its review of…

Continue Reading Independent Data Review Gives Go-Ahead for Rett Syndrome Clinical Trial
Company Releases Data From Open Label Trial of Experimental Fragile X Syndrome Treatment

Company Releases Data From Open Label Trial of Experimental Fragile X Syndrome Treatment

According to a story from globenewswire.com, the drug company Zynerba Pharmaceuticals, Inc. has announced that the data from its phase 2 open label trial has been officially published. This clinical…

Continue Reading Company Releases Data From Open Label Trial of Experimental Fragile X Syndrome Treatment
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Finding Light Through Story-The Power of Ambassadorship in the Endometrial Cancer Community
*cancer that cannot be removed with surgery or has spread to other parts of the body. GEJ= gastroesophageal junction (where the esophagus joins the stomach)
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