Minnesota Establishes Rare Disease Council to Better Serve the Community  

Sometimes through tragedy and hard times, a beacon of hope can emerge. After months of struggling with a rare aggressive disease, toddler Chloe Barnes passed away in 2008 in Minnesota.…

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This Company Just Announced Plans to Develop a Gene Therapy for Type 2A Charcot-Marie-Tooth Disease

According to a story from BioSpace, the genetic medicines company Passage Bio recently announced plans for its sixth program for gene therapy development. The company plans to work with the…

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New Study Will Investigate Methods to Improve Cancer Trial Participation for Historically Under-Represented Groups
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New Study Will Investigate Methods to Improve Cancer Trial Participation for Historically Under-Represented Groups

According to a story from journals.lww.com, The Lazarex Cancer Foundation and the University of California San Francisco have announced plans to work together on a three year study that will…

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An Experimental Drug Could be Effective for Neuromyelitis Optica, Study Results Show

According to a story from Biotech 365, the biotechnology company Viela Bio announced the publication of critical results from a recent study that tested the company's investigational drug inebilizumab as…

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A Patient Registry is Critical for Advancing Myalgic Encephalomyelitis Research
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A Patient Registry is Critical for Advancing Myalgic Encephalomyelitis Research

According to a story from meaction.net, Jaime Seltzer, the Director of Scientific and Medical Outreach at #MEAction, recently spoke at the Third Annual Working Group Meeting on the Molecular Basis…

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An Experimental Treatment for Pulmonary Arterial Hypertension Just Earned Orphan Drug Designation

According to a story from firstworldpharma.com, the biopharmaceutical company Acceleron Pharma, Inc., recently announced that the company's experimental product candidate sotatercept has earned Orphan Drug designation from the US Food…

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Alzheimer’s Disease: A Long Journey and Another Step Forward

  According to a recent article in MedicalXpress, the newest discovery in the search to reduce the risk of AD was through the work of researchers led by Dr. Jaehong Suh,…

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Combined Clinics Improves Treatment for Autoimmune Diseases
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Combined Clinics Improves Treatment for Autoimmune Diseases

According to a story from The Rheumatologist, evidence suggests that patients with rare diseases, such as autoimmune diseases, can benefit from visiting combined clinics, which are special medical centers in…

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In Canada, Medical Care is Covered. Now How Do You Afford Travel and Accommodations?
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In Canada, Medical Care is Covered. Now How Do You Afford Travel and Accommodations?

In the US, medical costs come in the form of drug prescriptions, doctors visits, expensive surgeries, and visits to specialists. As originally reported in The Tyee, in Canada, patients are…

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This Drug Could be a Breakthrough for Severe Familial Hypercholesterolemia, But How Much Will it Cost?
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This Drug Could be a Breakthrough for Severe Familial Hypercholesterolemia, But How Much Will it Cost?

According to a story from Forbes, a new drug developed by the company Regeneron has the potential to make a real difference for people with the homozygous form of familial…

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A “Real World” Study Suggests That The Drug Apremilast Could be Useful for Behçet’s Disease
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A “Real World” Study Suggests That The Drug Apremilast Could be Useful for Behçet’s Disease

According to a story from rheumatology.medicinematters.com, a recent Italian real-world study has provided some evidence that the drug apremilast, which is considered a phosphodiesterase-4 inhibitor, could be a useful treatment…

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The Sudden Closure of Northwestern University’s Stem Cell Therapy Clinic Raises Questions That Remain Unanswered

According to a recent article in The Scientist, Northwestern Medicine’s successful autoimmune and immunotherapy program is winding down and will be closed by the end of the year. The program,…

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Enrollment Finishes Early for a Late Stage Hemophilia B Gene Therapy Clinical Trial
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Enrollment Finishes Early for a Late Stage Hemophilia B Gene Therapy Clinical Trial

According to a story from Hemophilia News Today, the drug developer uniQure has completed its goals for patient enrollment ahead of time for is phase 3 clinical trial. This clinical…

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Companies Reach Partnership Agreement Related to an Experimental Treatment for ATTR Amyloidosis
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Companies Reach Partnership Agreement Related to an Experimental Treatment for ATTR Amyloidosis

According to a story from BioPortfolio, Alexion Pharmaceuticals, Inc. and Eidos Therapeutics, Inc., have recently struck an agreement related to the development and marketing of an experimental treatment for hATTR…

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Patients in Mayo Clinic’s RIGHT Study Carried One or More Genetic Variants That May Affect Their Response to Medication

  Pharmacogenomics plays an important role in predicting whether patients will benefit from certain medications or if the medication will cause serious side effects. The process involves the way in…

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