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For many, the journey through a neonatal unit can be overwhelming and stressful. The unit staff are always here to support you and answer any questions you and your family may have.

The following list of charities can provide further support and information on various topics. Some of the charities also have parent groups and networks that can connect you with others who have gone through similar experiences to yourself. We have found that some families contact other support networks from early on, while others contact them later in their journey when things have settled. Others wait until they have gone home and are looking back on their experiences and find that they would like further support. Each family is different, and the support is there no matter where you are in your journey.

• The Early Birth Association [EBA] – The EBA is a local charity who were created to make a positive difference for babies and families and the teams who work on the units by providing a wide variety of help and support. This ranges from providing practical items for the babies and parents on the units to make their hospital stay more homely and comfortable, to funding vital lifesaving equipment and research. The EBA is run by a group of volunteer parents and family members who have had premature or sick babies. They offer help and support, both emotional and practical, to parents who are facing the same worrying experiences that they once faced by regularly visiting the unit to run informal drop in coffee mornings, and by ensuring the units are stocked up with items and equipment that they need.
  
  

  Homepage
• Bliss – Bliss is the leading UK charity for premature and sick babies. They support parents with both practical help and emotional support. They have published many informative leaflets, have dedicated face to face volunteers who visit the unit to provide support, as well as an email service to provide support for those who would prefer this type of support. They are also heavily involved in improving standards of practice and care of the premature and sick infant by working alongside healthcare professionals to provide training, support and research. Furthermore, the charity campaigns and lobbies for changes to policy, investment and standards of care in order to make a lasting difference to neonatal services right across the UK. Bliss aims to standardise the care received by a family no matter where in the country you and your baby are cared for.
  
  https://www.bliss.org.uk/
• Mothers Union – The Mothers’ Union are an international community-based christian volunteer movement with a local branch based in Brighton. They work with families of all faiths and none and visit the unit regularly to provide a listening and supportive ear to parents, while providing delicious baked goods.
• Amaze (Brighton support group) – Amaze are a charity that provide advice and support to families of children and young people with special educational needs in Brighton & Hove and Sussex. Advice Line: 01273 772289
  
  https://amazesussex.org.uk/
• Contact – A charity for families with disabled children. They provide information, advice and support, as well as workshops for families. You can talk to an adviser through their helpline, access emotional support through their ‘listening Ear’ service or connect with online communities. They also campaign for policy change and research to tackle inequalities faced by families with disabled children. Helpline: 0808 808 3555 (Monday-Friday, 9:30am-5.00pm)
  
  https://contact.org.uk/
• Group B Strep Support – This UK wide charity provides information and support to families affected by Group B Strep (GBS). They raise awareness and provide education to aid in preventing and spotting early warning signs. As well as campaigning for changes to policy and research into GBS. Their helpline is open to provide you with support and answers to your questions around GBS. Helpline: 0330 120 0796 (Monday-Friday, 9am – 5pm)
  
  

  Group B Strep Support
• Twins Trust – Formally known as TAMBA [Twins and multiple Birth Association], this charity provides support and information to families of multiple births. Twinline is their support line for parents wishing to speak with other 27 multiple birth parents for support, reassurance or guidance. Twinline: 0800 138 0509 (Monday to Friday, 10.00am-1.00pm and again at 7.00pm-10.00pm)
  
  https://twinstrust.org/
• NEC UK – A parent led organisation that offers support to families affected by the condition at any stage of their infants’ journey. They offer support groups via online platforms and through emails, where families can share their experiences and coping strategies. You can email them on info@necuk.org.uk or visit their website
  
  https://www.necuk.org.uk/
• TOFS [Tracheo-Oesophageal Fistula Support] – A charity dedicated to improving lives for those born with OA/TOF/ VACTERL conditions. They do so by offering one-to-one support, a range of information and resources for families. They can be contact via telephone: 01159 613092 or via email: info@tofs.org.uk
• NCT [National Childbirth Trust] – The NCT’s mission is to support parents through the first 1,000 days to have the best possible experience of pregnancy, birth and early parenthood. They have lots of advice and support on their website for new parents. Their helpline provides practical and emotional support with feeding your baby as well as general information. Please see their website for usual opening hours. Helpline: 0300 330 0700
  
  https://www.nct.org.uk/
• Sands – Sands is the leading stillbirth and neonatal death charity in the UK. They provide support for anyone affected by the death of a baby for as long as they need it. They provide bereavement support via their helpline, online community and resources, and a mobile app. Helpline: 0808 164 3332
  
  https://www.sands.org.uk/

Sites on breastfeeding

• The Dutch Association of Lactation Consultants
• Nutrition Centre
• La Leche League (LLL).