A Reader Responds: A Common Parasite With An Uncommon Name: Toxoplasma Gondii is Associated with Brain Cancer
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A Reader Responds: A Common Parasite With An Uncommon Name: Toxoplasma Gondii is Associated with Brain Cancer

A reader named Fiorella, recently reached out in response to an article we wrote entitled: A Common Parasite With An Uncommon Name: Toxoplasma Gondii is Associated with Brain Cancer. This…

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Businesses Can Support Employees’ Participation in Clinical Trials and Change the Future of Research
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Businesses Can Support Employees’ Participation in Clinical Trials and Change the Future of Research

Financial Burdens in Rare Disease In 2019, 20% of all adults in the United States have reported that they had large medical bills that were unexpected. 18% currently had medical…

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FDA Decision on Opdivo with Chemotherapy for Advanced Gastrointestinal Cancers will be Made Next Month
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FDA Decision on Opdivo with Chemotherapy for Advanced Gastrointestinal Cancers will be Made Next Month

By May 25th, 2021 the FDA will announce their decision regarding approval of Opdivo used in combination with chemotherapy for gastrointestinal cancers. Back in December, Priority Review was granted to…

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A New Collaboration will Support the Distribution of a Novel Therapy for Arginase 1 Deficiency in the Middle East and Europe
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A New Collaboration will Support the Distribution of a Novel Therapy for Arginase 1 Deficiency in the Middle East and Europe

Aeglea Biotherapeutics has just announced a new collaboration with Immedica to bring pegzilarginase to other countries outside of the United States. They have created a license and supply agreement to…

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Despite the Pandemic, 2020 Had More Drug Development for Rare Diseases than 2019
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Despite the Pandemic, 2020 Had More Drug Development for Rare Diseases than 2019

Rare Disease Day is February 28th. This year, it caused a lot of reflection among healthcare professionals and families impacted by rare conditions. How has the pandemic shifted progress in…

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MdDS Warrior Kimberly Warner is Creating a Film to Document Living with a Chronic Illness
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MdDS Warrior Kimberly Warner is Creating a Film to Document Living with a Chronic Illness

Kimberly Warner Kimberly Warner was diagnosed with mal de débarquement syndrome (MdDS) after enduring a traumatic biking accident in May of 2014. The accident caused her to break her pelvis…

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A New Collaboration Will Support Research of Prader-Willi Syndrome and Other Rare Diseases
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A New Collaboration Will Support Research of Prader-Willi Syndrome and Other Rare Diseases

Vanderbilt University has just announced a new collaborative agreement with Soleno Therapeutics in aim to develop KATP channel activators as a therapeutic for rare diseases. This therapy has already been…

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Study Illuminates Differences Between Autoimmune Encephalitis and Acute Encephalomyelitis
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Study Illuminates Differences Between Autoimmune Encephalitis and Acute Encephalomyelitis

A recent study has documented the differences between two rare forms of childhood brain inflammation. The two similarly presenting conditions are often confused for one another. A better understanding of…

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Two Fathers of Daughters with Batten Disease Created a Bill Which Would Fund Genetic Testing
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Two Fathers of Daughters with Batten Disease Created a Bill Which Would Fund Genetic Testing

Mike Jackson's young daughter Evelyn was diagnosed with Batten disease after a neurologist suggested a genetic test which the family could take for free. John Barclay's daughter River passed away…

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New Collaboration in Charcot-Marie-Tooth Disease to Uncover Ways to Deliver Gene Therapies

James Dahlman, a scientist and professor at both Emory University and the Georgia Institute of Technology, has partnered with the CMT Research Foundation. The aim of this partnership is to…

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Study Illuminates the Need for More Research in Easing Charcot-Marie-Tooth Disease Symptoms

A recent study has illuminated the need for further research into how different forms of exercise may provide certain benefits for patients living with Charcot-Marie-Tooth disease (CMT). This study was…

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