Prader-Willi Syndrome Association UK

Our Family Weekends and Days Out are cherished for creating a safe and supportive environment where friendships naturally blossom among parents, adults, and children with PWS. These connections often extend beyond the events, continuing through online or in-person contact. It's all about building lasting bonds and a strong, supportive community. 

Be a compassionate touch at the heart of PWS clinics. As an Outreach Volunteer, you’ll play a vital role in connecting parents and carers with the support and resources offered by PWSA UK. This position is for those with personal experience of PWS, whether you're a parent, grandparent, or sibling, who can offer empathy and understanding. What Will You Do? As a Clinic-Based Outreach Volunteer, you will: Attend PWS clinics at designated hospitals, working alongside healthcare professionals. Provide non-medical support and information to parents and carers attending the clinic. Guide families towards additional resources and support offered by PWSA UK. Help raise awareness about PWSA UK and encourage membership. Commitment and Support: Attendance: Commit to attending clinics monthly or quarterly, as agreed with your PWS Specialist Advisor. Training: Participate in our comprehensive training and induction program, including ongoing training sessions. Support: Regular communication with your dedicated PWS Specialist Advisor, along with group supervision to ensure you feel confident and supported in your role. What We Expect: Adherence to PWSA UK’s policies, including confidentiality and safeguarding. Reliable attendance and communication. Respect for personal boundaries while representing PWSA UK. Why Join Us? Make a Difference: Your lived experience and compassionate presence can make a significant impact on families navigating PWS. Training and Development: We provide all the training you need to thrive in this role. Support: Enjoy ongoing support from your PWS Specialist Advisor and fellow volunteers. We are currently piloting this role at clinics in Brighton, Chelsea & Westminster, Birmingham, and Leeds. If you’re interested in joining us and making a real difference, please contact Wendy Thomas, our Volunteer Development Officer, at wthomas@pwsa.co.uk. Join us in providing crucial support to families and carers. Your experience and dedication can bring hope and guidance to those who need it most. 🧡 Note: Successful applicants will need to provide references and undergo a DBS check.  

Living with PWS can be challenging, especially when there’s a lack of understanding around the condition. The stigma associated with learning disabilities, neurodivergence, and the need for routine and food management can make it difficult for families to socialise outside their homes. Because PWS is so rare, many people affected by it—and their families—may never meet others who truly understand their experiences. This can feel incredibly isolating. Additionally, those with PWS may find it hard to interact with others and make friends. We recognise these challenges and are here to support you in finding connection and understanding. 

PWSA UK is seeking a passionate individual to join us as a part-time PWS Specialist Advisor for Northern Ireland. As a small charity, we are dedicated to providing lifelong support to those affected by Prader-Willi Syndrome (PWS), a rare genetic condition that leads to an uncontrollable drive to eat, along with learning and physical disabilities. We aim to make a meaningful impact in the lives of PWS families by offering a helpline, comprehensive information, peer support groups, community events, professional training, and support for vital research. Our goal is to help those in our community overcome challenges and live fulfilling lives. We are looking for someone who has a deep understanding of the health, social care, and education systems in Northern Ireland and a strong belief in the potential of people with PWS. The ideal candidate will have excellent interpersonal and communication skills, be self-motivated, and capable of engaging with families, healthcare professionals, and policymakers. This is a home-based role, perfect for someone living in Northern Ireland, with a commitment of two days a week on a fixed-term contract for two years. If you are interested in helping us make a difference, please send your CV and a covering letter to jlodge@pwsa.co.uk by 9 am on Monday, 23rd September. Interviews will be conducted via Zoom on Tuesday, 1st October. For more information or to discuss this opportunity, please contact Jackie Lodge at jlodge@pwsa.co.uk.

Our mission is to make sure every member of our community has access to high-quality care and support, empowering them to live their healthiest and most fulfilling lives. We’re here for you, every step of the way. 

Our dedicated volunteers make a real difference by facilitating Parent to Parent support groups. We also offer a private Facebook group through the PWSA UK Community Hub, where parents and carers can connect, share, and support one another in a safe, welcoming space. We know how vital it is to have a strong network, and we're here to help you build those connections. You're not alone—let's support each other on this journey. 

🌟 We're Hiring! Join PWSA UK as our Engagement Manager 🌟 Are you passionate about making a difference? PWSA UK, a small but mighty charity supporting those affected by Prader-Willi Syndrome (PWS), is looking for a part-time Engagement Manager to help us grow our influence and impact. PWS is a rare genetic condition that can be life-limiting, and we’re dedicated to providing lifelong support through our helpline, information hub, peer support groups, and more. We're seeking someone with creativity, innovation, and project management experience to help us build our brand, increase awareness, and support our community. This is a home-based role, 2 days a week, on a 12-month contract. If you're ready to help us make a real difference, send your CV and a statement of interest to jlodge@pwsa.co.uk by 5pm on Friday, 23rd August.

We are pleased to invite you to an exclusive research update event. Four leading pharmaceutical companies will present the latest progress in their clinical trials in the UK. Agenda Overview: 1. Aardvark will share developments on ARD-101 (Hyperphagia) 2. Acadia Pharmaceuticals will provide updates on Carbetocin (Hyperphagia) 3. Harmony Biosciences will discuss advancements with Pitolisant (excessive daytime sleepiness) 4. Soleno Therapeutics will explain progress on DCCR (Hyperphagia) Following the presentations, a brief Q&A session will offer the opportunity to engage directly with the experts behind these groundbreaking studies. Date: 10th September Time: 7:30-8:30pm Location: Zoom Reserve your spot today: https://bit.ly/3A6liXp

Great to see!

🎉 What an amazing Saturday it was on July 27th! We gathered with 10 wonderful families in Northern Ireland to discuss future support plans. We had the pleasure of meeting a precious baby and several inspiring young people with PWS. The warm Irish welcome and heartfelt conversations made the day truly special. Thank you to everyone who joined us and made it such a productive and fun event! 💖🍀 A special thank you to PWSA Ireland and Resilience Healthcare for helping us get together. #Community #NorthernIreland #PWSFamily #Grateful #pws #praderwillisyndrome