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Supporting parent organisations

Many European parent organisations support the development of European standards.

Parent organisations are organisations by and for parents of preterm born and ill born babies who needed treatment in the neonatal unit.

Our Premature Children | Bulgaria

A description will follow soon.

Vlaamse Vereniging voor Ouders van Couveusekinderen (VVOC) | Belgium

Vlaamse Vereniging voor Ouders van Couveusekinderen (VVOC) was founded in 1985.

The organisation  provides emotional and practical support for parents and families of preterm children hospitalised in a Neonatal Intensive Care Unit (NICU) during and after their stay in hospital.  VVOC provides information on prematurity on the internet and supports those concerned by phone. VVOC generates public awareness, cooperates with health professionals and stands for the interests of preterm babies and their parents in Flemish/Belgium and Europe. 

Friends of Neonatal Intensive Care Unit Association-Cyprus (FNICU) | Cyprus

Friends of Neonatal Intensive Care Unit Association – Cyprus was founded in 2011 by parents.

The aims of the organisation are to support affected parents with their experiences in the NICU, to make things better for them and the situation in Cyprus.

Nedoklubko o.s. | Czech Republic

Nedoklubko, z.s. is a non-profit and non-governmental parent organisation.

  • originated in 1996, formally established in June 2002
  • aims to support families of children with history of perinatal problems and promote cooperation between families, clinicians and researchers in the field in the Czech Republic
  • activities of Nedoklubko are supported by the Czech Neonatology Society
  • aims to support mothers after premature birth with a small gift, encouraging message, an information booklet, book, magazine etc.

Irish Neonatal Health Alliance | Ireland

Founded in Dec 2013, INHA’s vision is to support families affected by prematurity by advocating increased awareness, improved pre-conceptual, ante-natal education and post natal education equitable and standardized neonatal care and improved long-term care for both the premature baby and the family.

Our objective, through consultation with global networks of prematurity groups, healthcare professionals, educators, political decision makers and industry stakeholders is to foster the exchange of information, provide education to healthcare professionals and families and with one collective voice, to provide the platform for a coordinated and integrated program of collaborative support in the field of neonatal care in Ireland.

Irish Premature Babies | Ireland

Irish Premature Babies has its origins back in 2006, when a group of parents came together to hold Ireland’s only medium for parents of premature babies to meet other parents through various “get togethers” in Dublin.

In 2010, it was decided to officially set up Irish Premature Babies. The group was formalized in January 2010. We now have an amazing group of parents working with us.

Irish Premature Babies has three key objectives:

  • To support parents of premature babies.
    We have set up a one to one support system of over a hundred volunteers around Ireland and still hold regular meet ups for parents.
  • To create awareness of prematurity.
    Our association has a number of projects in the pipeline and will be promoting an awareness of the problems faced by parents on a national level.
  • To support and help fundraise the NICU’s in Ireland.
    The
    website offers a one stop shop consolidating information pertaining to having a premature birth in Ireland and covers items like
  • Rights & Entitlements from the government
  • Where to buy premature baby clothing
  • Sharing experiences of having a premature baby in Ireland
  • How to avail of discounts arranged with businesses by Irish Premature Babies
  • How to find support in the community.

PREMATURFORENINGEN | Norway

A description will follow soon.

Fundacja Wczesniak Rodzice – Rodzicom | Poland

A description will follow soon.

Pais Prematuros | Portugal

A description will follow soon.

malíček | Slovakia

A description will follow soon.

APREM | Spain

APREM, the Association for Parents of Premature Children of Spain, was founded in 1999 by a group of parents of premature children who met in La Paz hospital in Madrid (La Paz is a major public hospital which currently delivers the highest number of babies in Europe each year). APREM has, since then, become a point of reference in Spain for parents, doctors, nurses, therapists, politicians, etc. in the field of preterm children and prematurity. APREM has more than 300 members from all over the country.

Our modest mission is to help parents to be the best carers of their preterm children. With this mission always in mind,APREM activities include:

Website. www.aprem-e.org. APREM’s website is one of the most prestigious Spanish-language sites relating to the specific topic of premature children. It offers parents, relatives and friends information, services, counseling, educational materials and, what is even more important, love, support, comfort,…

Parent-to-Parent Support Program. Through a team of 10 volunteer parents, APREM offers emotional support and information to every single parent who requests it and assists them personally in the resolution of problems related to their premature children.

Ask the experts. APREM enjoys the support of two MDs, a Neonatologist, from the hospital La Paz, and a specialist on Rehabilitation, from the Gregorio Marañón Hospital (also in Madrid), who offer their expertise to the parents that need it.

Schools for Parents. In collaboration with several top hospitals in Spain, such as Hospital de la Paz, Hospital Puerta de Hierro, Hospital Beata María Ana, etc., APREM develops educational projects for parents of preterm children, whether on-site, during their stay in hospital, or after discharge.

Media. Prematurity is still quite an unknown phenomenum for the public at large. APREM actively participates in popular TV and Radio programmes concerning the situation of premature children in Spain, in order to raise public awareness about this big health problem.

Participation in Scientific Events. APREM has become a reference point for obtaining reliable information about the situation of premature families in Spain and participates in fora and congresses about prematurity.

Educational materials. APREM develops ‘short and quick guides’ for parents on issues related to caring for preterm children.

Prematura | Spain

A description will follow soon.

Federation FNAP | Spain

A description will follow soon.

Prematurföreningen Mirakel | Sweden

Prematurföreningen Mirakel is a political and religiously independent association. It was founded March 2013. The Board consists of Chairwoman Pernilla Brown (Gothenburg), Vice President Anna-Charlotta Hellner (Partille) and Treasurer Susanne Kéri (Stockholm).

Their aims are:

– Work proactively to reduce the number of premature babies

– Promote the appropriate information, education and training

– Work for advocacy and civic education in the field of premature

– Strengthen and develop national cooperation

Cooperation

Prematurföreningen Mirakel helps parents, health professionals and politicians to get ahead in the research, treatment and working practices, regardless of party political colour. The Board’s ambition is to awaken an interest in such cooperation as with insurance companies, pharmaceutical companies, health care, parents, non-profit organizations and politicians. Through cooperation there is considerable savings in cost and suffering. The association has started cooperation with Mer Organdonation. Nationwide family meetings have also been planned.

Riksförbundet Svenska Prematurförbundet | Sweden

Riksförbundet Svenska Prematurförbundet was founded in June 2013 by the three largest local parent organisations in Sweden: Stockholm/Uppsala, Gothenburg and Helsingborg. The federation grew quickly and is now active as well in Örebro, Umeå, Nyköping, Eskilstuna and Visby.

Svenska Prematurförbundet aims are:

  • to reduce the number of babies born prematurly in Sweden and abroad through prevention
  • to ensure that every child shall recieve the same care and treatment regardless of where in Sweden it is born through national guidelines
  • to ensure through guidelines and information that family centered care is implemented in every hospital in Sweden and abroad
  • to increase the awareness of prematurity in the society of Sweden and abroad through its work
  • to be a source and provider of information about prematurity to parents and relatives of a child born prematurely through support and acitivities
  • to build bridges between health care professionals in different parts of Sweden as well as between health care professionals and parents through dialogue

El Bebek Gül Bebek | Turkey

EBGB was founded by the end of 2007.

The founders were from different professions, including a mother of preterm babies, a neonatologist, a lawyer, a journalist,etc.

This young organisation is working on improving the rights of preterm babies as well as trying to support the families and help the preterm babies to meet their needs.