Long-Term Assessment of Salbutamol in SMA Type 3

10 April 2019 / Posted in: Treatments & Research

This latest article from our Clinical Care Research Correspondent, Dr Alex Murphy, discusses how Tiziano and colleagues studied individuals with SMA taking salbutamol over a one year period.

Read full story

Non-Muscle Related Effects of SMA

09 April 2019 / Posted in: Treatments & Research

Read this article by our Clinical Care Research Correspondent, Dr Alex Murphy, about research by Lipnick and colleagues who used a novel way to look at some of the non-muscle related effects of SMA.

Read full story

Survey: Accessing Cervical Screening (Smear Test) with a Physical Disability

04 April 2019 / Posted in: Information, Support

Disability Rights UK and Jo's Cervical Cancer Trust are running this survey to find out about experiences in accessing cervical screening (smear test), as well as what provisions are available to enable accessing screening.

Read full story

The EnAble Fund for Elected Office

04 April 2019 / Posted in: Information, Support

This fund is intended to cover the additional financial costs associated with a disability, that would otherwise prevent someone from seeking elected office.

Read full story

Your Views On Access To Rare Disease Medicines

04 April 2019 / Posted in: Treatments & Research

Genetic Alliance UK are working on a policy project to improve access to medicines for rare diseases, called Resetting the Model. They have launched a survey to understand your views on how decisions should be made around access to rare disease medicines.

Read full story

New Rare Barometer Voices Survey on Rare Disease Patients’ Experience of Treatments

27 March 2019 / Posted in: Treatments & Research, Support

This global survey on rare disease patients’ experience of treatments is open to anyone from any country in the world who is living with a rare disease, as well as their family members and carers. It closes on 30th April.

Read full story

Send Mum the best gift of all Send Mum the best gift of all

19 March 2019 / Posted in: Help Us

Support SMA UK this Mother's Day

Read full story

Positive Interim Results from Phase I Trial Announced by Scholar Rock

18 March 2019 / Posted in: Treatments & Research

Scholar Rock have announced positive interim results from an ongoing Phase I trial in healthy volunteers of their lead compound, SRK-015.

Read full story

Neuro Numbers: The Neurological Alliance Report

14 March 2019 / Posted in: Information, Support

This new report highlights data including that more than one in six people in England are living with one or more neurological conditions, including SMA. It's being used to call for greater prioritisation of neurology by the health and care system.

Read full story

Study to Explore the Quality of Care Received by Children and Young People on Long-Term Ventilation

11 March 2019 / Posted in: Information, Support

This study is currently being conducted by NCEPOD about the quality of care received by those aged 0-24 years on long-term ventilation (including non-invasive). They are looking to hear from both patients and parent carers for their views.

Read full story