How This Family Is Using Halloween to Raise Money for NGLY1 Deficiency
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How This Family Is Using Halloween to Raise Money for NGLY1 Deficiency

Now that it's officially October, it's time to celebrate my personal favorite holiday - Halloween. That means haunted houses, scary movies, creative costumes, and spooky decorations. One Transcona family is…

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Indian Government to Place Regulative Measures on Crowdfunding for Rare Diseases
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Indian Government to Place Regulative Measures on Crowdfunding for Rare Diseases

Rare disease therapies are often difficult to access, whether that is due to price, a patient's location, or another factor. Because of these obstacles, many rare disease patients find themselves…

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Improving Rare Disease Clinical Trials
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Improving Rare Disease Clinical Trials

Clinical trials face many obstacles regardless of which disease they aim to investigate. However, rare disease trials face additional problems that don't typically impact studies for more common conditions. Small…

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Clinical Trial of Vamorolone Receives Orphan Grant Funding
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Clinical Trial of Vamorolone Receives Orphan Grant Funding

Funding for clinical trials can be an issue, especially for rare disease studies. Luckily, there are programs that exist to help with the financials, such as the "Clinical Studies of…

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