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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Grandma Raises Spinal Muscular Atrophy Awareness After Grandson’s Death
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Grandma Raises Spinal Muscular Atrophy Awareness After Grandson’s Death

When Rhonda Stevey met her grandson, Koehyn, she was immediately smitten. The grandmother, who lives in Ohio, felt like her grandson was the happiest infant she had ever met. Unfortunately,…

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Singapore: 29,000 Donors Responded to a Plea By Devdan’s Parents For a One Time Gene Therapy Treatment That Costs $2.8 Million
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Singapore: 29,000 Donors Responded to a Plea By Devdan’s Parents For a One Time Gene Therapy Treatment That Costs $2.8 Million

According to YAHOO News, twenty-two-month-old Devdan has a rare disease called type 2 spinal muscular atrophy (SMA2) which affects nerve cells that control muscles. If left untreated progressive muscle weakness…

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Evrysdi (risdiplam) Shows Promising Results in Tiniest Spinal Muscular Atrophy Patients
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Evrysdi (risdiplam) Shows Promising Results in Tiniest Spinal Muscular Atrophy Patients

by Lauren Taylor from In The Cloud Copy Spinal muscular atrophy or SMA is a disease that affects the patient’s central nervous system, peripheral nervous system, and skeletal muscles or…

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