A Subcutaneous Form of Remsima May be Available Soon in the EU

Celltrion Healthcare has just announced positive progress for extending the authorization for the subcutaneous (SC) form of Remsima to five more autoimmune conditions. These are- Psoriatic arthritis Ankylosing spondylitis (AS)…

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UK Moves to Make Whole Genome Sequencing Standard in the NHS, Improving Diagnosis for Rare Disease Patients

A recent study has demonstrated that through standardizing the whole genome sequencing process and making it routine for patients, we can improve rare disease diagnosis across the board. Earlier diagnosis…

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Botox is on Its Way to Become a New Therapeutic Option for Children with Neurogenic Detrusor Overactivity

Botox Botox was first approved as a treatment for strabismus and blepharospasm, rare eye conditions, in 1989. Now, it is approved for 11 different conditions including cervical dystonia, chronic migraines,…

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A New Partnership will Advance Exosome-Based Gene Therapy for Neuromuscular Diseases

By engineering exosomes, Sarepta Therapeutics believes they can utilize gene therapies, RNA therapies, and gene editing without triggering an immune response in the body. They have just announced a new…

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Researchers Find Effective Biomarker for Predicting Severity of Myositis-Associated Interstitial Lung Disease

A team of researchers recently evaluated a new biomarker in interstitial lung disease to see whether or not it could predict disease severity and ultimately mortality. The Biomarker Surfactant protein…

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Generic Version of the Neupro Patch Coming Soon for Parkinson’s Disease Patients
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Generic Version of the Neupro Patch Coming Soon for Parkinson’s Disease Patients

There is now a new version of the Neupro patch coming! This generic version was created by Vektor Pharma. Vektor concentrates on transdermal systems both through patches on the skin and…

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Podcast Series Released to Increase Awareness and Education for Nonalcoholic Steatohepatitis
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Podcast Series Released to Increase Awareness and Education for Nonalcoholic Steatohepatitis

International Nonalcoholic Steatohepatitis (NASH) Day takes place on June 12th every year. This year, a 4 part podcast series was released by NASHNET as part of the continued effort to spread…

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New Investigative Therapy for Acute Myeloid Leukemia and Myelodysplastic Syndromes is Being Investigated
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New Investigative Therapy for Acute Myeloid Leukemia and Myelodysplastic Syndromes is Being Investigated

Antigen-specific T-cell therapy is an innovative treatment option which uses immune cells to combat cancer cells. AdventHealth is the very first in the world to use this treatment for patients…

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1.95 Million Dollar Grant from the NIH will Support Research for Multiple Sclerosis and Related Diseases
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1.95 Million Dollar Grant from the NIH will Support Research for Multiple Sclerosis and Related Diseases

Leszek Ignatowicz, a researcher from Georgia State University, recently received a 5 year, almost 2 million dollar grant from the NIH for his investigation into multiple sclerosis (MS). This project…

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Hereditary Angioedema Patients Explain how an Oral Treatment Option Could Change Their Lives
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Hereditary Angioedema Patients Explain how an Oral Treatment Option Could Change Their Lives

Over 2018 and 2019, BioCryst Pharmaceuticals conducted two surveys to better understand the needs and expectations of hereditary angioedema (HAE) patients. Overall, they found that despite progress in HAE therapies,…

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Myositis Research Could Aid in COVID-19 Vaccine Development

Myositis Myositis is an autoimmune disease that leads to muscle damage. Patients live with chronic disability due to the symptoms of this rare condition. These include skin rashes, pain, weakness, fatigue,…

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New Marker Found to Track Disease Progression in Charcot-Marie-Tooth Disease Type 1a

A study conducted by researchers from Aix-Marseille University in France has revealed a new way to track disease progression of Charcot-Marie-Tooth disease type 1a (CMT1a)- changes to the nerves within the thigh.…

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Positive Results Announced for a Phase 1 Trial Targeting Root of Chronic Urticarias

Celldex has just released positive results from a Phase 1 trial of an investigative therapy which could benefit patients living with chronic urticarias. This disease can result in decreased energy,…

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International Nonalcoholic Steatohepatitis (NASH) Day Sparks New Collaboration for Research
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International Nonalcoholic Steatohepatitis (NASH) Day Sparks New Collaboration for Research

International NASH Day, or IND, began in 2018 to raise awareness of nonalcoholic steatohepatitis (NASH). This is the most advanced form of fatty liver disease. It is a progressive condition…

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Those with Disabilities and Rare Medical Conditions in Canada are Excluded from Financial Relief During Covid-19

Kimberly Underhay Kimberly Underhay is a Canadian who has survived cancer. She has also been diagnosed with osteoarthritis and has to use a walker. Her disabilities have left her unable…

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The Very First Treatment for Neurofibromatosis Type 1 Has Been Approved by the FDA

Neurofibromatosis  Neurofibromatosis is a rare condition that presents in different forms. Neurofibromatosis type one (NF1) causes tumors to grow on the plexiform neurofibromas, a type of nerve in the body. These tumors…

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An App in New Zealand Allows IBD Patients to Communicate with Their Specialists Virtually

IBDsmart Researchers at the University of Otago, led by Michael Shultz, have developed a new app called IBDsmart to help patients with ulcerative colitis or Crohn's disease receive care remotely.…

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This Muscular Dystrophy Patient has Spent Her Life Working to Improve the Lives of Others
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This Muscular Dystrophy Patient has Spent Her Life Working to Improve the Lives of Others

Jalee Pelissier lives with muscular dystrophy. When she was just 13 she became an advocate for others with disorders or disabilities like her own. Now 20, her advocacy has only…

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