At CMV Action, we understand that navigating the challenges of cytomegalovirus (CMV) can be overwhelming. Whether you’re look for information, emotional support, or practical assistance, we’re here to help you connect to the right services for your needs. Together, we can ensure that you and your family receive the support and help you need.
Can’t find what you’re looking for? Get in touch with our support team who will help point you in the right direction.
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.
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.
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
If you have received help from a charity or organisation please let us know and we can add them to the list.
