National WSS Warriors
Warriors for Love, Respect, and Raising Awareness.
A community and support network for families impacted by Wiedemann-Steiner Syndrome, or WSS. This rare, genetic condition effects around 1000 families worldwide.
Understanding WSS
How we can help you
We’re delighted to have you here! To deepen your understanding of Wiedemann-Steiner Syndrome and discover local and national support resources, our dedicated Warriors are always ready to assist and guide you on your journey.
families
Discover Support & Understanding
Connect with other families who understand the unique challenges and rewards of living with WSS. Discover relatable resources that provide guidance and support during the diagnosis journey and beyond. You don’t have to navigate WSS alone; we’re here for you.
medical professionals
In-depth Research & Insights
Stay up-to-date with the latest research on WSS and access comprehensive resources to deepen your understanding of the condition. Equip yourself with the knowledge needed to provide the best possible care to your patients and early diagnosis.
educators
Empowering Students to Thrive
View an example One Page Pupil Profile for a child with WSS. Gain essential insights and tools to support the learning and growth of students with WSS in your classroom. Foster an inclusive and nurturing environment that empowers every child to reach their full potential.
What is Wiedemann-Steiner Syndrome?
Wiedemann-Steiner Syndrome is an extremely rare genetic condition. It can affect both children and adults, and is normally associated with developmental, behavioural and learning difficulties.
However, WSS can affect different people in different ways. For example, some WSS sufferers may find they are diagnosed with autism, while others may suffer from low muscle tone.
Please make sure to read our full guide to WSS to learn more – and do reach out if you have any questions!
We are all learning more about what Wiedemann-Steiner Syndrome is, and how we can help affected people of all ages live healthy, happy lives.
Building a Stronger wss community in the UK
Wiedemann-Steiner Syndrome, or WSS, affects thousands of families, yet little is known about the condition! For those diagnosed with WSS and their families, it is always so important to have access to kindness and support.
We are NWSS Warriors. From our own experiences with the rare disorder, we have set up our charity and open community to help raise awareness of what WSS is and help those afflicted find care, guidance, and even access to life-changing equipment.
Wiedemann-Steiner Syndrome affects so many lives – more than we may even be aware of! But remember, you are never alone.
We provide a safe space where you can share your experiences and learn more about life with the condition.
What do we do?
Our team of Warriors are bringing WSS families together!
We are inspired by our own experiences with this rare condition. A WSS diagnosis can be scary, but you should never have to suffer alone, or in silence.
Our aim is to raise awareness of Wiedemann-Steiner Syndrome, and how it can impact everyday life for hundreds, even thousands of people. Currently, there is very little information available for families to learn more about what to do after diagnosis.
That’s where NWSS Warriors aim to make a change.
- Experience fun days, receive essential equipment, and access specialist care through our fundraising efforts for WSS families.
- Connect with a supportive online and real-life community, creating a valuable network for you and your loved ones.
- Navigate the complexities of WSS diagnoses with ease, as we break down vital information for those affected and their families.
- We give hope to thousands of people who may feel scared or unsure of what happens next. We work to open doors and create opportunities for anyone affected by WSS - you can achieve your goals and hopes, and we want to help.
Your Support Crew
Compassionate Mums with shared experiences
These devoted mothers, who have personally experienced the challenges of a WSS diagnosis, are the driving force behind NWSS Warriors. They organise fundraising events, foster an inclusive community, and raise awareness about the condition, offering empathy, understanding, and guidance to families on their WSS journey.
Alison
Hi, I am Alison, Co-Founder of The National Wiedemann Steiner Syndrome Warriors. I am Mum to Georgia, and we live in Ossett, West Yorkshire.
Georgia was diagnosed in 2018 through the DDD study in Cambridge that was headed by Dr Wendy Jones. The diagnosis was the final missing piece of the jigsaw for Georgia. It brought together all of her other disabilities under one condition: Wiedemann Steiner Syndrome. Georgia is diagnosed with Autism, Dyspraxia, Hypertonia, Learning Disabilities and Bi-lateral Hip Displacement, all of which are features of WSS.
Our Charity and Website aim to bring families closer together from all over the world and to let you know you are not alone. We are one big family that faces difficult daily struggles, continuously learning from each other.
Amanda
I am Amanda, warrior mam to Emerald, and we live in Northumberland with dad Paul, big sister Tegan and 2 crazy hounds.
Emerald was diagnosed in 2020, just before the pandemic, she was nearly 13. It gave us a reason for lots of other quirks and issues over the years. Emerald loves spending time with her warrior friends, or family as we call them either in person at meet-ups or online. Like many teens, she’s very into music and youtube. As a family, we love to caravan and the great outdoors. Since joining the WSS world we’ve discovered the amazing support of the NWSSW crew. The bigger the family becomes, the more we can all learn and support each other.
Kelly
Hi, I’m Kelly, mum to Lewis, who is 14, and we live in North Wales with his Dad, Scott and older brother, Sam.
Lewis was diagnosed with Wiedemann-Steiner Syndrome in 2015, aged 6, after being referred to the DDD study in 2012. Getting a diagnosis gave us the reason why he’d had such a tough start in life, but due to the syndrome being so rare, there was no support. In 2017, Alison Sharp joined the WSS Foundation Facebook group (based in the USA) and connected with other UK families and worked tirelessly to get our charity set up. From then on, our UK WSS family has gone from strength to strength. The support from everyone in our group is amazing, and I can’t wait to see what we can achieve going forward.
Kym
Hi, I’m Kym. Mum to Theo, who is 11. Alison was one of the first Mums who I had regular contact with following our diagnosis 6 years ago. It was a lonely time without much information or support available. We shared a passion for wanting to get the best help and support we could for our warriors and other families like us. And now look where we are.
Charlotte
I’m Charlotte, mum to Millie, who was diagnosed with WSS in January 2020. Alongside WSS, Millie has Autism, Chiari Malformation, Craniosynostosis, Klippel-Feil Syndrome, learning difficulties and global development delay. We are from Worcestershire in the UK.
Joanne
Hi, my name is Joanne, and I am mum to Bethany, who is 16. Bethany was diagnosed with WSS when she was 8/9. I hadn’t heard of the syndrome before I did some research and found Alison on Facebook. We got in touch and met up with our children, which was perfect. We couldn’t get over how much the girls looked alike. Myself and Alison decided to set up a charity which we are all very proud of.
You're Not Alone
Explore Our WSS Community
Living with Wiedemann-Steiner Syndrome can be challenging, but our loving and supportive community is here to help you navigate this journey.
With a better understanding of WSS, we can provide a strong network for families to share experiences, find help, and raise awareness. Our collective efforts are making a difference, and we invite you to become a part of our growing family.
Join the NWSS Warriors today, explore our resources, and connect with others who truly understand your experiences. United, we create a brighter future for everyone affected by WSS.
read our stories
Be sure to read our stories and learn more about what we’re doing to support WSS families like your own.
Backpack of Resources
Register for our free email list and receive regular guidance, news, event information and more from NWSS Warriors.
Join our Community
Come and join our friendly Facebook community and share your own story, read others’ experiences, and find care and support whenever you need it.
Get In Touch
Let’s understand WSS together.
