Become a Member

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 and allows us to put parents in touch for support.

The information will be kept confidentially and will not be shared with anyone without your permission.

How we can help

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:

  • A named individual at the end of the phone, email or private message on social media
  • If you join us you can be put you in touch with other families in similar circumstances or in your area
  • Our team of volunteer support advisers all have experience of congenital CMV. They are here to talk to you about your experiences, point you in the direction of further information and advise wherever possible

Please contact us by phone if your support query is urgent.

Contact a support advisor by:

Your support team

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.

Response time

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.

Help and Advice

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.

Charities for Grants

Boparan Trust

Provide funding to children with disabilities, life-limiting illness and those who are in extreme poverty in the UK.

www.theboparancharitabletrust.com

Caudwell Children

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.

www.caudwellchildren.com

CEA Card Application

Anyone in receipt of DLA can apply for a card allowing them free cinema access for their carer.

www.ceacard.co.uk

CEREBRA

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.

www.cerebra.org.uk

CP Sport

The country’s leading national disability sports organisation supporting people with cerebral palsy to achieve their sporting potential.

www.cpsport.org

Disability Grants

Helping parents and carers of a disabled child or adult to identify disabilities and grants.

www.disability-grants.org

Dreams come true

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.

www.dreamscometrue.uk.com

Family Fund

The UK’s largest provider of grants to low-income families raising disabled and seriously ill children and young people.

www.familyfund.org.uk

Newlife

Provide items of equipment to disabled and terminally ill children across the UK.

www.newlifecharity.co.uk

Merlins Magic Wand

Charity providing magical experiences for children who need them most.

www.merlinsmagicwand.org

Sequal Trust

Provides funding towards communication aids for people with disabilities across the UK.

www.thesequaltrust.org.uk

Sunny Days Fund

Grants to help children with a wide range of adverse medical conditions.

www.sunnydaysfund.org.uk

Fledglings

Non-profit shop helping children and adults with special needs with products and equipment to help with everyday challenges.

www.fledglings.org.uk

Starlight Foundation

Programmes and support for hospitalised children.

www.starlight.org.uk

Skybadger

Building bridges between disabled children and charities and services available to help.

www.skybadger.co.uk

Other Charities & Organisations

Self help from Citizen’s Advice

http://www.adviceguide.org.uk/

ARC (Antenatal Results and Choices)

Helping parents and healthcare professional through antenatal screening and its consequences

www.arc-uk.org 

Tommy’s

Offers support for families after baby loss.

www.tommys.org

Bliss

Advice and support to parents of premature and sick babies.

www.bliss.org.uk

Contact a Family

Supports and brings together families with disabled children.

www.contact.org.uk

Homestart

Local community network helping families with young children through challenging times.

www.home-start.org.uk

Kids

Information, support  and network of play centres/activities.

www.kids.org.uk

Mencap

Services, projects and campaigns to improve lives of people with learning disabilities.

www.mencap.org.uk

National Autistic Society

www.autism.org.uk

Dyspraxia Foundation

www.dyspraxiafoundation.org.uk

Portage

Home visiting education system for preschoolers with special educational needs and disabilities.

www.portage.org.uk

Scope

Practical information and support for disabilities in England and Wales.

www.scope.org.uk

Young Minds

Charity committed to improving the emotional wellbeing and mental health of children and young people.

www.youngminds.org.uk

Deaf Issues/Speech

NDCS (National Deaf Childrens Society)

www.ncds.org.uk

Auditory Verbal

www.avuk.org

Auditory Processing Disorder Service

ais@southampton.ac.uk

Southampton University 023 8059 9608

CICS (Cochlear Implanted Children’s Support Group)

www.cicsgroup.org.uk (Also regional groups)

Elizabeth Foundation for Pre-School Deaf Children

www.elizabeth-foundation.org

Mental Health, CAMHS

www.swlstg-tr.nhs.uk/our-services/deaf 

High Trees – South West London & St Georges – Deaf CAMHS – 01622 741 881

Speech Language and Hearing Centre – St Christophers Place

www.speech-Language.co.uk

020 783 3834, SALT – london

Vision

Sense

For deafblind and those with sensory impairments.

www.sense.org.uk

RNIB (Royal National Institute for the Blind)

www.rnib.org.uk

Nystagmus Network

Patient information, support and scientific research charity for nystagmus in Europe.

www.nystagmusnetwork.org

Scottish Sensory Centre

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.

www.ssc.education.ed.ac.uk

Seeability

Supporting people who have multiple disabilities including visual impairment, learning and physical disabilities, mental health difficulties, acquired brain injury and life limiting conditions.

http://www.seeability.org/

Wonder Baby

For parents of young children with visual impairments as well as children with multiple disabilities.

http://www.wonderbaby.org/

STATEMENT / EHC

IPSEA

Independent Panel for Special Education Advice

www.ipsea.org.uk

SEN Legal

SEN Legal is a nationwide specialist legal practice representing the families of children with Special Educational Needs and Disabilities.

www.senlegal.co.uk

ACE Education Service

Provides advice and information to parents and carers on a wide range of school based issues including exclusion, admissions, special education needs.

www.ace-ed.org.uk

Prospect (formerly Parent Partnership)

www.prospect.org.uk/our-industries/education-services/parents

Information, advice and support for families with children who have SEN

SOS!SEN

A free, friendly, confidential telephone helpline for parents and others seeking information and advice on special educational needs.

www.sossen.org.uk

Sibs

UK charity representing the needs of siblings of disabled people.

www.sibs.org.uk

Special Educational Needs and Disability Code of Practice: 0 – 25 years

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

https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/398815/SEND_Code_of_Practice_January_2015.pdf

Bereavement

Sands

Stillbirth and neonatal death

www.sands.org.uk

If you have received help from a charity or organisation please let us know and we can add them to the list.

Support Groups

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.

International Groups

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.

Australia:

CMV Australia  https://www.cmv.org.au

Canada:

CMV Canada https://cmvcanada.ca

Czech Republic:

Spolu Proti CMV https://www.spoluproticmv.org

France:

Changer Marcher Vivre  https://chantermarchervivre.org

Germany:

Stark Gegen CMV https://www.starkgegencmv.de

Israel:

The Israeli Association for CMV Pregnancy  https://www.cmv.co.il/cmv-homepage-english

Italy:

Anti Cito  https://anticito.org

Japan:

Association for Congenital Toxoplasmosis and Cytomegalovirus Infections https://www.toxo-cmv.org

Spain:

Familias CMV https://familiascmv.org

USA:

National CMV Foundation  https://nationalcmv.org

European Congenital Cytomegalovirus Initiative (ECCI)

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.

 

National Congenital CMV Disease Registry (USA)

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

Center for Disease Control and Prevention

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.

https://cdc.gov/cmv