ICYMI: The Affordable Care Act May be Ruled Unconstitutional: Patient Groups Unite to Ask for a Prompt Decision
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ICYMI: The Affordable Care Act May be Ruled Unconstitutional: Patient Groups Unite to Ask for a Prompt Decision

As originally reported in NewsRoom, the US's political volatility over the past years has thrown many policies and legislation into debate. While switching the party in both the executive and…

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How a Community has Rallied Around a Teenage Girl with Glioma
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How a Community has Rallied Around a Teenage Girl with Glioma

When Lily Wythe, a 14-year-old from Eastwood in England, was diagnosed with diffuse pontine glioma (also known as DIPG), her friends and family knew they had to do something to…

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Will Therapies for Neurological Disorders Bring Forth a New Era for Biotech?
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Will Therapies for Neurological Disorders Bring Forth a New Era for Biotech?

According to a story from BioBuzz, the innovation of a platform for the delivery of gene therapies could help trigger a golden age of development for this new class of…

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Phase 2 Trial for Amyotrophic Lateral Sclerosis has Completed Enrollment
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Phase 2 Trial for Amyotrophic Lateral Sclerosis has Completed Enrollment

FightMND is an Australian nonprofit organization dedicated to improving the lives of motor neurone disease patients through funding research for cures. They've successfully provided millions toward research initiatives and clinical…

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“If You’ve Grown Up With Your Disease From Day One, You Never Know What It’s Like to be Healthy.” Patient Stories in the #IAmNumber17 Campaign

As originally reported in PR Week; pharma company Takeda has been joined a plethora of rare patients groups to create the 'I am Number 17 ' campaign which features 17…

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This Glomerulonephritis Patient has Been Receiving Dialysis Treatment for Over 30 Years. Now he Shares his Discipline with Other Patients
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This Glomerulonephritis Patient has Been Receiving Dialysis Treatment for Over 30 Years. Now he Shares his Discipline with Other Patients

  According to a recent article in the MalayMail, it occurred to Abdullah’s doctor that the 67-year-old would be an inspiration for others who have kidney failure. His nephrologist, Dr.…

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First International Awareness Day for Alagille Syndrome was Held January 24th
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First International Awareness Day for Alagille Syndrome was Held January 24th

International Alagille Awareness Day The very first International Alagille Awareness day was held on January 24th, 2020. What is Alagille syndrome? It is a rare disease which effects the heart,…

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ICYMI: The Manufacturer of Spinal Muscular Atrophy Drug Zolgensma has Made a Lottery for Life
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ICYMI: The Manufacturer of Spinal Muscular Atrophy Drug Zolgensma has Made a Lottery for Life

As originally reported in Euronews, there is limited supply of expensive medicines for rare diseases, so it can be difficult to prioritize which patients will have their lives saved when…

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