Articles, Newsletters, Podcasts, and Video

Cure SMA Advocates for Better Wheelchair Storage for Air Travel

By Steve Bryson PhD / 2021-10-08
Posted in

In a letter to a U.S. Department of Transportation Advisory Committee, Cure SMA called for better wheelchair handling and storage for people with spinal muscular

more

Important! Take part in this consultation about the shortage of PAs and social care staff due to immigration controls

By Bob / 2021-10-08
Posted in

What’s the problem? Changes to border policies mean lot’s a personal assistants and live-in social care worker staff that disabled people rely upon for everyday

more

What Should Mavacamten Cost?

By hcmbeat / 2021-10-07
Posted in

On October 22, patients, physicians, and other interested parties will have the opportunity to provide input on the value and cost of mavacamten – the first drug specifically designed to treat hypertrophic cardiomyopathy.

more

Disability News Service 7th October

By Bob / 2021-10-07
Posted in

  Disability minister says addressing DWP’s legacy of distrust and distress ‘is a big priority’ The new minister for disabled people has said it is

more

Urgent : Warning for EU citizens claiming UK Universal Credit – Please share –

By Bob / 2021-10-07
Posted in

From The Guardian : EU citizens face losing benefits if they fail to update DWP profile People unaware they need to input code on universal

more

Recruitment message from the Edge Fund

By Bob / 2021-10-07
Posted in

Do you want to work for an organisation that aims to shift power to communities?   Do you believe that communities should decide how money

more

Statement by Extinction Rebellion regarding letting ambulances and other emergency vehicles pass roadblocks

By Bob / 2021-10-07
Posted in

October 05, 2021 by Extinction Rebellion Extinction Rebellion has a strict policy of letting ambulances through our nonviolent protests. This is a matter of public

more

‘Rare’ Documentary in Kickstarter Campaign to Raise $45K by Oct. 28

By Shayna Korol / 2021-10-06
Posted in

A crowdfunding campaign aims to raise $45,000 to support “Rare,” a documentary film featuring the struggles and achievements of people living with rare diseases and

more

Canadian Agency Favors Zolgensma Only for Babies Up to 6 Months Old

By Steve Bryson PhD / 2021-10-06
Posted in

The Canadian Agency for Drugs and Technologies in Health (CADTH) will not recommend reimbursement for Zolgensma in children with spinal muscular atrophy (SMA) who are more

more

September 2021 Policy News Round-Up

By Nicole Jurewicz / 2021-10-04
Posted in

Budget reconciliations negotiations continue in Congress on major education investments, the Office of Civil Rights investigates potential discrimination of mask mandate bans on students

more