Our Services: What we do

Bespoke PWS training and expert guidance for professionals, including care providers and educational settings.

• Online and face to face training courses for professionals and organisations supporting people with PWS.
  
• Expert guidance in mental capacity assessments and Positive Behaviour Support.
  
• Webinars and conferences for families and professionals.

Specialist PWS information and resources for families,  professionals and people with PWS.

• UKs largest collection of specialist information about PWS.
  
• Peer reviewed best practice guidelines and information for management of PWS for professionals.
  
• Practical resources for families, professionals and people with PWS.
  
• Templates and checklists for PIP/DLA/EHCP and other forms.
  
• Network of PWS expert clinicians.
  
• Practical information in an easy read format for adults with PWS.
  
• Dedicated online areas for families, professionals and people with PWS.

One to one support and guidance from our PWS specialist advisers, whether you need expert advice, or just to talk in confidence to someone who understands PWS.

• Mon – Thursday 9am -5pm Friday 9am-1pm.
  
• Signposting to specialist services and relevant local and national organisations.
  
• Support with referrals to specialist services and clinicians.
  
• Advice on benefits, statutory rights and best practice support for PWS, including mandatory reconsideration.
  
• Help navigating the SEND, health and social care systems.
  
• A listening ear from someone who understands the struggles of PWS.

Helping people access the support they need and navigate the health, education, social care and justice systems.

• Crisis support when residential or educational placements break down.
  
• Attending multidisciplinary meetings and tribunals.
  
• Writing letters of support for benefits, housing, health or social care support.
  
• Providing expert guidance to professionals supporting people with PWS in crisis situations.
  
• Reviewing EHCPs/ care plans to ensure they provide adequate support for the person with PWS.

In person events and online opportunities to connect, share experiences and spend time with others affected by PWS.

• Community days and weekends.
  
• Parent to parent online support groups.
  
• Online and in person events for adults with PWS.
  
• National conferences.

Help and advice for parents who've recently been given a diagnosis of PWS, with a dedicated named member of staff to support you through your journey.

Supporting research into the science of PWS and potential new treatments as part of our Stronger Together Partnership with the Foundation for Prader-Willi Reasearch UK (FPWR UK).

Fighting for a better future for people with PWS by creating impactful campaigns that bring about change.