Welcome to CVSA UK
We are a registered charity providing information and support to sufferers of
Cyclical Vomiting Syndrome and their families.
Please remember to update us if your email address changes.
Family Day 2017
Saturday 11th November
Birmingham Children's Hospital
Our Speakers
Prof. Qasim Aziz
Royal London Hospital
“Pattern recognition in CVS-a personal perspective”
Nicola & Louise Kipping
“CVS- A patient and parent experience”
Put it in the diary now - all welcome - free to attend - free creche
ebay
This October, eBay for Charity will be counting every time a charity is picked as a favourite on eBay. The charities that have collected the most favourites during the month will win prizes. So pick us as your favourite charity on eBay and help us win up to £7k.
Go to our page here, (during October!) and click on "Add to My Favourites". That's all you need to do.
You can also sell items in support of CVSA from this page too. You can donate part or all the proces to the charity, it is a simple way to help us.
Petition to make CVS a recognised Disability
CVS sufferer Charlotte Fovargue has created a petition, please support her by signing it!
Rare Disease UK
The UK Rare Disease Forum (the group charged with monitoring the implementation of the UK Strategy for Rare Diseases) will be reporting on the progress made in delivering the 51 commitments in the Strategy in time for Rare Disease Day 2018.
As part of the UK Rare Disease Forum’s work in monitoring progress they want to hear from families and patients affected by rare conditions.
Please take a moment to rate your rare disease care. The survey will only take a few minutes and will help us understand if care and treatment for people affected by rare conditions is improving.
Take the survey here.
CHILDREN AND YOUNG PEOPLE'S PROJECT
Rare Diseasers Uk are also holding another initiative:
The Children and Young People’s project aims to make sure that everyone affected by a rare, genetic or undiagnosed condition, no matter their age, has a voice where it matters.
We want to develop a picture of what it means to be a young person living with a rare or undiagnosed condition, or to be a sibling of somebody that is affected. To do this the project will use a range of flexible and fun activities to engage with young people aged between 5-10.
We are also holding an event for young people aged between 11-17 at Birmingham Children's hospital.
Find out more here
Tina West talks about CVS on Radio Stoke
Listen here
and a short video on the BBC which has had thousands of hits
US Publicity
Chandra Wilson who acts in the US hit show Gray's Anatomy was interviewed about her daughters CVS
Awareness Day March 5th
Lucy Maven, an adult CVS sufferer told her story to the local press.
She was interviewed on Radio Tees
Listen here it starts at 38 minutes
Gary Philipson Show 4/03/17
Please do whatever you can to raise awarenss of CVS
News
Listen to Dr Sonny Chong on Radio 4
Inside Health
Tuesday 4th October 9pm
or on catch up
Please consider sending your story and sharing it in our next Newsletter. We really appreciate your input and our members find hearing others experiences very helpful.
AWARENESS DAY March 5th
Thank you to everyone who contributed to last year's Awareness day.
We hope all the CVS societies and supporters around the world had a great day and that we have started something that can only grow and grow and help more and more people.
Have you got your T shirt yet?
Fruit of the Loom brand, heavy cotton. Order from the Awareness page
Organising an event? We now have a MyDonate page where you can collect funds online, link below - its simple to set up and all money raised comes to the charity- no fees applied.
The UK now has the lowest public spending on scientific research of any G8 country
This is really bad news not just for medical research but every aspect of our economy. Britain has always had a strong science base and in many fields we have led the world. We are world leaders in many fields of research, producing over 10% of global scientific output with only 1% of the global population. It's a really shortsighted move to lose that leadership position. Please support the campaign by
Buy Trolley Coins/Keyrings Ribbons and Wristbands to support CVSA
T-shirts can be ordered now! In Stock
see our Awareness Day page
New: CVSA eBook available on the Apple iBook store for Mac, iPad and iPhone- free
CVS Voices
This dangerous and ill considered bill has been defeated- for now. It would have legitimised pseudoscientific and purely "quack" treatments. This is good news for everyone but we need to be vigilant and promote evidence based treatments.
Seen a health claim that's too good to be true? Then Ask for Evidence
Text Donations to CVSA UK
Just text CVSA10 £XX where X is an amount £2, £5 or £10 to 70070
All medical information on this site has been reviewed by our Medical advisors, shown below, people's individual stories on our Experiences pages are their own views and do not constitute medical advice. Our site contains advertising links that help support the charity. Neither the trustees nor any of our medical advsiers benefit in anyway from these links and have no commercial links to our advertisers.
Dr Sonny Chong Consultant Paediatrician Queen Mary’s Hospital, Carshalton, Surrey
Keith J Lindley BSc (Hons) PhD MB MRCP(UK) MRCPCH UCL Institute of Child Health, Great Ormond Street Hospital
Dr Ishaq Abu-Arafeh, Consultant in Paediatrics and Paediatric Neurology Forth Valley Royal Hospital and the Royal Hospital for Sick Children, Glasgow
Dr Alberto Ravelli Pediatric gastroenterologist and hepatologist Brescia University, Italy Dr Simon Moodie Consultant Gastroeneterologist Epsom & St Helier NHS Trust Surrey Dr Krishnappa Venkatesh Consultant Paediatric Gastroenterologist Alder Hey Children's Hospital Liverpool Dr Maureen Lawson Consultant Paediatric Gastroenterologist Great Northern Children's Hospital Newcastle
The information on this site is provided to help you understand CVS and support sufferers but is not intended to replace any advice from your own health care professional.
Confidentiality
We do not sell or pass on any personal information you may provide us if you contact us to any 3rd party. We maintain a database of membership, members can request paper records are kept and opt out of the database entry.
About CVSA
We are an all volunteer organisation, a registered charity with all funding being provided via the sponsored links on our purchase pages, membership fees and by voluntary donations.
Advertising
Our editorial content is not influenced by the funding sources. Our website hosts sponsored ads and links from which the charity earns a small income, 100% of this income is spent on supporting the charities aims. We don't accept advertising from any adult-orientated material or from advertisers promoting any "treatments" for CVS.
Our website hosts advertising banners only. Advertisement is distinguished by the word ‘Advertisement’
This site complies with the HONcode standard for trustworthy health information:
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