Articles, Newsletters, Podcasts, and Video

Benefits and Work asking for help

By Linda / 2021-06-23
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A leading barrister has told Benefits and Work that the way the LEAP review has been carried out may be unlawful and that there is

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Major Developmental Milestones Met in Infants, Zolgensma Data Show

By Steve Bryson PhD / 2021-06-23
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New data about Zolgensma, the one-time gene therapy for children with spinal muscular atrophy (SMA), demonstrate age-appropriate development when used pre-symptomatically, and rapid, meaningful efficacy in

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Advocates Applaud Full Pardon of Neli Latson, a Young Black Man with Disabilities, After Decade of Injustice

By Ianthe Dempsey / 2021-06-22
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After more than a decade of unjust prosecution and abuse in the criminal justice system, Neli Latson, a Black man with multiple disabilities, is

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EveryLife Introduces First of Kind ‘Roadmap’ to ICD Codes

By Mary Chapman / 2021-06-22
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To help patient advocacy leaders and their partners better understand how global health statistics codes — known as ICD codes — are assigned, updated, and

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Newborn Screening in Massachusetts Seen as Highly Accurate, Effective

By Marta Figueiredo PhD / 2021-06-21
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Newborn screening (NBS) for spinal muscular atrophy (SMA) in Massachusetts allowed for early detection and treatment of affected infants, with most referred to a specialist within

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Rail Access Campaigning #StaffOurStations

By Bob / 2021-06-20
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#StaffOurStations Disabled People need to support #StaffOurStations campaign. The government white paper on transport is disastrous, replacing ticket office staff with a website and an

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Positive Myectomy Outcomes for Patients 65+

By hcmbeat / 2021-06-19
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According to a recent retrospective study at Oregon Health & Sciences University, appropriately selected patients 65 or older who underwent septal myectomy for obstructive hypertrophic cardiomyopathy (HOCM) have surgical outcomes similar to younger patients.

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Government consultation on evacuation plans for disabled people

By Bob / 2021-06-19
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From CLADDAG: Leaseholders Disability Action Group Firstly, we want to check you are aware of the Government consultation on evacuation plans for disabled people? There

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SMA News Today Launches Survey to Gain Understanding of Disease Community

By Shayna Korol / 2021-06-18
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SMA News Today is conducting a U.S.-based survey to better understand the characteristics, needs, and treatment experiences of the spinal muscular atrophy (SMA) community.

Adults —

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Disability News Service 17th June

By Bob / 2021-06-17
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  Government and NHS discrimination linked to COVID deaths of disabled people Discrimination by the government as it responded to the pandemic, and within the

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