Joining the CMV group helps you to keep up to date with what we are doing at CMV Action. It also gives us vital information about the extent of CMV .
The information will be kept confidentially and will not be shared with anyone without your permission.
At CMV Action we understand just how difficult a diagnosis of CMV can be for your family. The early days following diagnosis can be bewildering and upsetting. As your child gets older they may face new challenges as a result of the virus.
This is why we provide our members with a very personal support service:
Please contact us by phone if your support query is urgent.
Contact a support advisor by:
CMV Action has seven support volunteers who have been supporting pregnant women and families for over 20 years. They all have relevant experience of CMV and have been trained. Their experience includes professional experience and personal experience such as having a child or grandchild with the virus and baby loss.
When you contact CMV Action we will pass your details to a volunteer who has the appropriate experience and knowledge to support you. If you then decide to become a member you can be put in touch with families living near you or/and families with similar experiences, if you wish to. We can also contact medical advisors if your query relates to a medical issue.
Some children born with CMV will not have any health problems, others will have more serious problems. Our team of volunteers has been chosen to cover a range of different issues that families may face.
Please be aware that this service is provided by volunteers. Although we will try and respond to your enquiry as soon as possible, we may not always be able to do so straight away.
We will aim to get back to you within three days. If it is urgent please phone 0808 802 0030.
Our volunteers are not health professionals but we do have medical professionals that we can refer to if necessary. However, they will happily support you through decisions you need to make and talk about your experiences and concerns as well as their own experiences.
At CMV Action we aim to provide information and support to families. We empower parents to work effectively with professionals and advocate on behalf of families affected by CMV.
There are many charities and groups that can help you.
Provide funding to children with disabilities, life-limiting illness and those who are in extreme poverty in the UK.
www.theboparancharitabletrust.com
Provides family support services, equipment, treatment and therapies for disabled children and their families across the UK. They also run an autisim service and a supported holiday/short break scheme.
Anyone in receipt of DLA can apply for a card allowing them free cinema access for their carer.
Cerebra helping children with brain conditions and their families. Providing research-driven solutions and advice, guides, factsheets and other resources offering comprehensive information on a wide variety of issues. Services include a Sleep Advice Service and book & toy library.
The country’s leading national disability sports organisation supporting people with cerebral palsy to achieve their sporting potential.
Helping parents and carers of a disabled child or adult to identify disabilities and grants.
Enabling children and young people with serious or life-threatening conditions from disadvantaged backgrounds to feel the long-term benefits of having a dream fulfilled.
The UK’s largest provider of grants to low-income families raising disabled and seriously ill children and young people.
Provide items of equipment to disabled and terminally ill children across the UK.
Charity providing magical experiences for children who need them most.
Provides funding towards communication aids for people with disabilities across the UK.
Grants to help children with a wide range of adverse medical conditions.
Non-profit shop helping children and adults with special needs with products and equipment to help with everyday challenges.
Are you a young person with a life threatening illness or is your sibling very seriously ill? We support children and their families up to the age of 18
https://www.rainbowtrust.org.uk/support-for-families
Programmes and support for hospitalised children.
Building bridges between disabled children and charities and services available to help.
http://www.adviceguide.org.uk/
Helping parents and healthcare professional through antenatal screening and its consequences
Offers support for families after baby loss.
Advice and support to parents of premature and sick babies.
Supports and brings together families with disabled children.
Local community network helping families with young children through challenging times.
Information, support and network of play centres/activities.
Services, projects and campaigns to improve lives of people with learning disabilities.
www.dyspraxiafoundation.org.uk
Home visiting education system for preschoolers with special educational needs and disabilities.
Practical information and support for disabilities in England and Wales.
Charity committed to improving the emotional wellbeing and mental health of children and young people.
ais@southampton.ac.uk
Southampton University 023 8059 9608
www.cicsgroup.org.uk (Also regional groups)
www.swlstg-tr.nhs.uk/our-services/deaf
High Trees – South West London & St Georges – Deaf CAMHS – 01622 741 881
020 783 3834, SALT – london
For deafblind and those with sensory impairments.
Patient information, support and scientific research charity for nystagmus in Europe.
Educational resources for everyone who is involved in the education of deaf children, deafblind children and visually impaired children and young people, the young people themselves and their families.
Supporting people who have multiple disabilities including visual impairment, learning and physical disabilities, mental health difficulties, acquired brain injury and life limiting conditions.
For parents of young children with visual impairments as well as children with multiple disabilities.
Independent Panel for Special Education Advice
SEN Legal is a nationwide specialist legal practice representing the families of children with Special Educational Needs and Disabilities.
Provides advice and information to parents and carers on a wide range of school based issues including exclusion, admissions, special education needs.
www.prospect.org.uk/our-industries/education-services/parents
A free, friendly, confidential telephone helpline for parents and others seeking information and advice on special educational needs.
UK charity representing the needs of siblings of disabled people.
A lengthy 300 pages but very useful when you find the part you are looking for.
Includes information on Education and Health Care Plans, Provision, Personal Budgets, Appeals and much more.
Statutory guidance for organisations which work with and support children and young people who have special educational needs or disabilities
January 2015
If you have received help from a charity or organisation please let us know and we can add them to the list.
Listed here are some of the support groups and social media pages available to help people affected by CMV. We are not responsible for the content of these groups and external links.
https://www.facebook.com/CMVAction
https://www.facebook.com/profile.php?id=335321217452204&ref=br_rs
https://www.facebook.com/groups/372198926159/
https://www.facebook.com/groups/429050184370965/
https://www.facebook.com/groups/218264801533244/
https://www.facebook.com/groups/780541626100279
https://www.facebook.com/groups/417930608257146/
https://www.facebook.com/groups/111579365608685/?fref=ts
https://www.facebook.com/groups/169027052659/
https://www.facebook.com/groups/344031389038023/
https://www.facebook.com/groups/PMGawareness/
https://www.facebook.com/groups/1012619822134426/?__mref=message_bubble
https://www.facebook.com/groups/256608334755554
https://www.facebook.com/search/top/?q=congenital%20cmv%20
https://www.facebook.com/groups/141964685818509/
https://www.facebook.com/groups/100310213409356/
https://www.facebook.com/groups/SNEUK/
https://www.facebook.com/groups/433614973384226/
CMV Action is a UK based charity and primarily supports families living in the UK. We sometimes receive enquiries from families living abroad and we will always try to give them as much help and support as possible. If you are contacting us from outside the UK we may ask you for more information such as what medical and family support is available where you live and also tell you which other charities/overseas organisations you could contact.
CMV Australia https://www.cmv.org.au
CMV Canada https://cmvcanada.ca
Spolu Proti CMV https://www.spoluproticmv.org
Changer Marcher Vivre https://chantermarchervivre.org
Stark Gegen CMV https://www.starkgegencmv.de
The Israeli Association for CMV Pregnancy https://www.cmv.co.il/cmv-homepage-english
Anti Cito https://anticito.org
Association for Congenital Toxoplasmosis and Cytomegalovirus Infections https://www.toxo-cmv.org
Familias CMV https://familiascmv.org
National CMV Foundation https://nationalcmv.org
The European Congenital CMV Initiative is a network of professionals based throughout Europe with a united interest in congenital CMV infection. The group is composed of virologists, epidemiologists, immunologists, obstetricians an paediatricians whose aim is to promote awareness of cCMV and support and encourage research initiatives into this infection.
The registry is a research programme working to learn more about children born with symptoms of congenital CMV disease. Aside from research, the National Congenital CMV Disease REgistry provides an outreach programme consisting of a website, written educational material and an annual newsletter, CMV updates for the purpose of educating health care professionals, families and all others interested in learning more about cCMV. Additionally available is a parent support network and forum where parents can contact other parents dealing with the challenges of raising a child born with CMV. https://www.bcm.edu/departments/pediatrics/divisions-and-centers/congenital-cmv-disease-research-clinic-registry
US agency which focuses on research and support for disease prevention. They have information on many different aspects of cCMV and podcasts about how you can help to avoid infection whilst pregnant. Do note that much of the information will be specific to the US health system.
