TreatSMA

Cambridge University Hospitals denies free life-saving treatment due to age, for the second time!

28 November 2020

Cambridge University Hospitals (CUH) is regarded as one of the most reputable medical institutions worldwide and provides specialist services to many conditions nationally and internationally, including being a Neuromuscular Centre of Excellence as awarded by MDUK. Therefore, it begs the question, why, when the FDA, MHRA and most other Neuromuscular Centres across the country are prescribing risdiplam to patients of all ages, does CUH feel able to have a different opinion to all of these experts?

Cambridge University Hospital continues to deny free life-saving treatment based on age

3 December 2020

As you know our mission is treatment for all, and we have continued this fight by exposing Cambridge University Hospitals of their continued age discrimination against those with Spinal Muscular Atrophy. Equal access to health is the very tenant of the NHS yet CUH seem to feel otherwise.

If you or your child lives in England, has SMA type 3, and have lost the ability to walk, please respond to this survey.

25 November 2020

If NICE recommends next year that England’s Managed Access Agreement for nusinersen should change to include you / your child, would you want to access this treatment?

Physio with Marion – Physio in baths, hot tubs and swimming pools

8 November 2020

Today Marion covered physio in baths, hot tubs and swimming pools.

Petition to Fund Spinraza for all SMA patients needs 10,000 signatures!

6 November 2020

Dear Community, Earlier today we were contacted by Labour MP Kerry McCarthy on behalf of her constituent and SMA community member Jake Ogborne. Jake and his family have started the petition 'Fund Spinraza for all SMA patients on the NHS'. As…

Government release information on how to get support if you’re clinically extremely vulnerable to coronavirus

4 November 2020

The government have released information on how to get support. You can access it here. You can use this service to: get access to priority supermarket deliveries ask for someone to contact you about any local support that’s available update…

UK Government release new guidance for Shielders

4 November 2020

The UK Government have released new guidance for Shielders. You can read the new guidance here.

Shielders Have Some Questions for the UK Government.

2 November 2020

TreatSMA helped Shielders get their voices heard about the new shielding policies. Many shielders have been left with so many 'What If's'! We are calling on the government to give more support to those who need and want to shield!…