Living Well with Dystonia
This is a video presentation I created called Living Well with Dystonia. It shares some of the many things I have learned in my almost 20 years of living with…
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Living Well with Dystonia
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U.S. Fda Grants LYNPARZA® (olaparib) Orphan Drug Designation for Pancreatic Cancer
The United States Food and Drug Administration has granted the drug Lynparza® (olaparib) Orphan Drug Designation for the treatment of pancreatic cancer. Lynparza is used in the US to treat…
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U.S. Fda Grants LYNPARZA® (olaparib) Orphan Drug Designation for Pancreatic Cancer
Actress Selma Blair Announces her Multiple Sclerosis Diagnosis
You may know her from movies like Legally Blonde, Cruel Intentions, and Hellboy - but now Hollywood star Selma Blair has a new role she's tackling: multiple sclerosis advocate. Just…
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Actress Selma Blair Announces her Multiple Sclerosis Diagnosis
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A Potential Drug for Progressive Familial Intrahepatic Cholestasis Achieves Fast Track Designation
The United States Food and Drug Administration has granted Fast Track designation to a drug being researched as a potential treatment for progressive familial intrahepatic cholestasis, a serious liver disease…
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A Potential Drug for Progressive Familial Intrahepatic Cholestasis Achieves Fast Track Designation
Technology is Changing the Rare Disease World
Across the globe, countries are transitioning their healthcare systems to provide more care within the patient's home and less in a hospital setting. Why? Simply put, it's because there's beginning…
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Technology is Changing the Rare Disease World
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Families Hope That Provinces in Canada Will Cover Expensive Therapies for Rare Diseases
British Columbia faces excruciating decisions about how and whether to cover drug treatment for rare diseases. One particular drug is Spinraza. It is a drug that is a part of…
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Families Hope That Provinces in Canada Will Cover Expensive Therapies for Rare Diseases
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Rare Pediatric Disease Designation Awarded to a Drug for MPS I
The United States Food and Drug Administration has awarded Rare Pediatric Disease Designation to a potential drug for Mucopolysaccharidosis type I. For more detailed information about this news, you can…
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Rare Pediatric Disease Designation Awarded to a Drug for MPS I
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New Apps for Tracking MS Symptoms: The Risks and Benefits
Multiple sclerosis is a disease that can effect every aspect of daily life. However, symptoms vary on a day to day basis and the lack of predictability makes the disease…
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New Apps for Tracking MS Symptoms: The Risks and Benefits
This Week at the FDA: A Win For a Potential Pancreatic Cancer and Narcolepsy Treatments and a New List of Pediatric Cancer Targets
Happy Friday everyone! The leaves are beginning to change, and so are ongoing activities at the FDA. This week, we're highlighting four FDA announcements we think you should hear about.…
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This Week at the FDA: A Win For a Potential Pancreatic Cancer and Narcolepsy Treatments and a New List of Pediatric Cancer Targets
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Living With Pemphigus: Kelly Calabrese’s Story
This story contains images of severe lesions and blistering. On the weekend of October 12-14th of 2018, Patient Worthy had the privilege of attending the International Pemphigus & Pemphigoid Foundation's …
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Living With Pemphigus: Kelly Calabrese’s Story
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Things You Should Know About Rheumatoid Arthritis
Rheumatoid (RA) is one of the most common forms of arthritis that affects people. According to Rheumatoiarthritis.org statistics, 1% of the global population has rheumatoid arthritis. While this includes both…
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Things You Should Know About Rheumatoid Arthritis
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Early Data Looks Favorable for CAR-T Cell Therapy as a Treatment For Acute Lymphocytic Leukemia
According to a story from finanznachrichten.de, the Korean biopharmaceutical company Biocure Technology, Inc., recently announced the results of a pre-clinical trial that tested CAR-T cell therapy as a treatment for acute…
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Early Data Looks Favorable for CAR-T Cell Therapy as a Treatment For Acute Lymphocytic Leukemia
FibroScan Imaging Can Diagnose Nonalcoholic Steatohepatitis
According to a story from Healio, recent testing has found that FibroScan, a form of medical imaging, is capable of detecting nonalcoholic steatohepatitis earlier than it would be possible to…
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FibroScan Imaging Can Diagnose Nonalcoholic Steatohepatitis
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Experimental Drug Halts Infantile Neuroaxonal Dystrophy in its Tracks
According to a story from Market Screener, the pharmaceutical company Retrotope has recently released data that indicates that the company's experimental product RT001 is capable of halting disease progression for…
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Experimental Drug Halts Infantile Neuroaxonal Dystrophy in its Tracks
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Research Reveals Relationship Between Multiple Sclerosis and Digestive System Flora
According to a story from EurekAlert!, a recent study from the University of Zurich has illuminated the connection between the gastrointestinal flora and multiple sclerosis. The discovery illuminates the potential…
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Research Reveals Relationship Between Multiple Sclerosis and Digestive System Flora
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Patient Groups and the FDA Meet For Charcot-Marie-Tooth Disease Drug Development
According to a story from Charcot-Marie-Tooth News, a recent meeting between the US Food and Drug Administration (FDA) and patient advocacy groups took place to discuss the future development of…
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Patient Groups and the FDA Meet For Charcot-Marie-Tooth Disease Drug Development
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The FDA Has Granted Orphan Status to a Potential Narcolepsy Drug
The United States Food and Drug Administration has awarded Orphan Drug Designation to an investigational drug for narcolepsy, and there are plans to carry out a Phase 2 study to…
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The FDA Has Granted Orphan Status to a Potential Narcolepsy Drug
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Prominent Cardiologist Exposed For Falsifying Data
According to a story from the New York Times, Harvard University has recently called for the retraction of 31 studies authored by a cardiologist associated with the school. The cardiologist…
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Prominent Cardiologist Exposed For Falsifying Data
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A Phase 3 Study Shows Encouraging Results for a Potential Treatment for Charcot-Marie-Tooth Type 1A
Encouraging topline results from a pivotal Phase 3 study into a drug for Charcot-Marie-Tooth type 1A disease have been shared by Pharnext. To find out about this news in more…
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A Phase 3 Study Shows Encouraging Results for a Potential Treatment for Charcot-Marie-Tooth Type 1A
Save the Date! MDS Patient & Family Forum in Miami
Don't miss this special two day event made possible by The Myelodysplastic Syndromes Foundation , Sylvester Comprehensive Cancer Center at the University of Miami and The Aplastic Anemia and MDS International Foundation MDS…
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Save the Date! MDS Patient & Family Forum in Miami
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Could This “Stomach Bug” Cause Cancer?
According to recent research, a bacteria that causes some forms of stomach cancer may also be responsible for increased risk of colon cancer. The research points to this being especially…
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Could This “Stomach Bug” Cause Cancer?
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Hope for a More Effective Brain Cancer Treatment
Of pediatric cancers, brain cancer has the highest rate of mortality and medulloblastoma is the most common of brain cancer diagnoses in children. It's a brain cancer that originates in…
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Hope for a More Effective Brain Cancer Treatment
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‘Solving Medical Mysteries’: How The Undiagnosed Diseases Network Helps Patients Find Answers
The Undiagnosed Diseases Network (UDN) is working to help patients with rare undiagnosed conditions find answers. So far, they have helped more than two hundred patients achieve a diagnosis. About…
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‘Solving Medical Mysteries’: How The Undiagnosed Diseases Network Helps Patients Find Answers
Top Misconceptions to Clarify About Achondroplasia (Dwarfism) During Awareness Month
October is Achondroplasia (Dwarfism) Awareness Month! Achondroplasia is a bone growth disorder that causes dwarfism. Dwarfism is defined as a condition of short stature as an adult. People with achondroplasia are…
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Top Misconceptions to Clarify About Achondroplasia (Dwarfism) During Awareness Month
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This Company Just Endorsed New Patient Advocacy Guidelines
According to a story from globenewswire.com, the biopharmaceutical company Orphazyme has officially endorsed a set of guidelines that outline how rare disease patient advocacy organizations and drug companies should interact…
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This Company Just Endorsed New Patient Advocacy Guidelines
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