What you can do
Together, we're not just facing the future, we're changing it.
Whether you were diagnosed last week or two years ago, we know that living with Superficial Siderosis can be tough.
Hospital appointments, handling medication, juggling family responsibilities and sorting out finances. It's easy to feel helpless.
The past few years have seen exciting advances in awareness, diagnosis and treatment of Superficial Siderosis but there is still some way to go
As a UK registered charity, we're determined to help people from around the world to fight back. Your contribution, however large or small, makes a difference.
Be part of the resistance
Fundraising should be fun. Think about what your strengths are and what you'd like to have a go at. Whether it's a fun run, a tea party or a music evening, get your thinking cap on, get a few friends together, come up with a few ideas and then get the ball rolling. We're here to support you.
The easy way to raise money and raise awareness. Colourful wristbands embossed with our name and charity web address. Hand them out, sell them at an event, give one to your doctor. Click to find out more and order a batch today.
Your time is precious to you, we know that. But your time is valuable to us too. Whether you've a background in business and marketing or you're a practical, level-headed events organiser - your skills are just what we need. Please get in touch. You may be just the person we need.
Bright, unique and beautiful quality, you won't find these cards in the shops and 10% from all sales go straight to us. Click on Anne-Marie's link below, buy stunning cards for friends and family and raise money for research. It's that easy. Don't forget to enter code Silent18 at the checkout.
We're not medical specialists but our team are experts in living with Superficial Siderosis. Log on to get involved with our Facebook group - we've a carers group too. Or organise a meet like the one we had in London recently. Any help you need, we're on hand.
Managed by Living with SS, a separate organisation we work alongside, the Patient Registry is the first of its kind and aims to give a broader, world-wide view of people with Superficial Siderosis. Find out more about the project and sign up here.
A rare condition like Superficial Siderosis is a numbers game. Awareness leads to diagnosis and diagnosis leads to awareness - but it all starts with research. A one-off donation helps us to support research today but a regular donation will help us support it tomorrow too. Thank you.
Download one of our informative leaflets to share with family, friends or your doctors today. Or, order a printed batch from us if you're planning an event. We've wrist bands too, which are great for fundraising.
Our Q&A with Dr Levy gives you access to a valuable source of information. At the forefront of research and the deferiprone pioneer, he has unrivalled knowledge of Superficial Siderosis and its treatment. Browse the Ask a Specialist pages to find out more about diagnosis, medication and symptoms or do a search using the box in the header. There's also an informative webinar with Dr Levy to get you started.