Urgent action needed - new legislation could disadvantage those with PWS

The Down Syndrome Act could mean that the needs of people with PWS and other rare syndromes are de-prioritised when it comes to health, education and care.

We urgently need as many people as possible to fill in this survey to tell the Government that this cannot be allowed to happen.

When funds are tight, the needs of people with Down's syndrome could be prioritised at the expense of those with PWS and other rare syndromes, taking away vital care and resources from our community.

We support the rights of people with Down's syndrome to have their needs enshrined in law, but what we need now is to have PWS and other syndromes included in the guidance.

If we don’t do this, this act could lead to people with PWS facing discrimination in all areas of their life.

We need you to fill in the survey as soon as possible to tell the Government that our PWS community needs the same treatment!

If you would like to support our campaigning to protect the rights of those with PWS join us as a member now.

IMPORTANT: We have been advised by the Department of Health and Social Care that those taking part in the survey should select the option ‘carer or family member of someone with Down’s syndrome’ and then answer the questions as though you are talking about PWS – and where there are sections for you to write comments, please mention Prader-Willi syndrome each time.

The survey closes at 11.45pm on 8^th November 2022.