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 2018
Saturday 10th November
Birmingham Children's Hospital
Put it in the diary now - all welcome - free to attend - free creche
Supporting CVS
Grace Carmichael is raising funds for CVS by taking part in a Fun Run in Glasgow. Please support her and ask your friends and family to do the same
You can sponsor her here
Jo Hughes is walking the 46miles from Ediburgh to Glasgow to raise funds for CVSA.
You can sponsor her here
Nick Carlton is doing a skydive in support of CVSA UK.
You can sponsor him here
Heather Hughes is raising funds with a sponsored swim, you can read more and support her here
Cook Book to Support CVSA
Bindu Kejriwal has written a cook book and is donating profits to CVSA.
"After my son had been diagnosed and successfully treated, I decided that I wanted to do something to help the organisation that had helped us in our hour of need."
Please email me if you would like to buy a copy. As my costs should now be more than covered by pre-orders, the entire proceeds from all future sales will go to CVSA.
www.whatelsecanieat.co.uk
bindu@whatelsecanieat.co.uk
So far Bindu has raised an amazing £1500 - thanks so much!
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.
Can You Help ?
We need help with the committee, most roles don't take up much time.
PLease let us know if you can spare some time to help us keep CVSA working for all CVS sufferers.
A description of the roles can be found here
Petition to make CVS a recognised Disability
CVS sufferer Charlotte Fovargue created a petition, it is now closed but she gathered over 46,000 signatories. Thanks to her for setting this up, and to everyone who supported the casue.
News
Listen to Dr Sonny Chong on Radio 4
Inside Health
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.
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
Donate
The methods below are just soem of the ways you cna contribute. These methods have very low admin fees compared to some donation sites. If you plan a sponsored event the BT myDonate is a great way to help us.
Text Donations to CVSA UK
Just text CVSA10 £XX where X is an amount £2, £5 or £10 to 70070
Click the logo below to support us via GoFund Me
Petition to make CVS a recognised Disability
CVS sufferer Charlotte Fovargue has created a petition, please support her by signing it! The petition now has over 30,000 signatories. If you haven't signed yet, please do now. Let's hit the 50,000 target.
Resources
We hear of many sufferers who don't think they are being treated seriously, and struggle to get diagnosis or treatment. Some people have their jobs at risk due to what appears to their employer to be unexplained absences. Parents face the same issue with schoools, when a child has not got a diagnossis they recognise.
Thanks to a member for providing links to some useful resources:
As the UK's only national membership charity for carers, Carers UK is both a supportive community and a movement for change.
For the past 50 years we've been driven by carers raising their voices together to call for change and seek recognition and support.
A charity that provides information, advocacy and advice services across England, offering direct and local support via Professionals and Volunteers.
Our advocacy service is a free and confidential service available to anyone who wants support to make a complaint to the NHS.
Seen a health claim that's too good to be true? Then Ask for Evidence
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’
Privacy Policy
We hold data on members for the purposes of sending them newsletters and other charity-related emails. We ask members who in the family has CVS and if the member provides that information we will record that data. We ask members if they would be willing to speak to journalists, and if they agree we will pass their details to a specific journalist for the purposes of a potential article/radio or TV interview. Occasionally we may ask members if they wish to take part in medical research relating to CVS. We will never pass details without asking.
You can ask to be removed from our list at any time and we will completely erase your data. If you wish to see what data we do hold on you please email info@cvsa.org.uk. We never pass or sell your information to any third party without your explicit consent.
This site complies with the HONcode standard for trustworthy health information:
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