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This new report, launched today, is calling for better treatment and care for the 150,000 children and adults living with a rare neurological condition, including SMA, in England.

The Care and Support Alliance are running this survey to find out what it is has been like needing care, in England, during the pandemic. It should take around 15 minutes to complete.

Prof Felicity Boardman has done extensive research on the social and ethical implications of genomic medicine from the perspectives of people with genetic conditions. I:DNA is a virtual, immersive art installation which is an artistic representation of all this research. You can ask questions ahead of a live Q&A on 11th November.

In August 2020, new government guidance set out how NHS Continuing Healthcare (CHC) would be reintroduced in England from 1st September 2020, along with a new Hospital Discharge Policy. Beacon have provided further information around this.

It’s been 6 months since DWP increased Universal Credit by £20 a week but failed to give the same increase to those on legacy benefits. Now is our opportunity to make sure the Chancellor doesn’t let over two million people go without the £20 per week increase for another year. Write to your MP.

Genetic Alliance UK are organising a series of virtual workshops on the topic of cell and gene therapies, sometimes referred to as Advanced Therapy Medicinal Products (ATMPs). Date to register closes 26th October.