National Premmie Foundation
A national non profit organization involving Australia’s premature baby support groups, that unifies and acts as a guiding body for existing prem support groups, help to create new ones, help to improve the treatments and outcomes available for premature infants, and represent the interests of these infants and their families in terms of health policies, funding and standards of care.
The National Premmie Foundation is a proud Global Collaborative Partner of
- Bliss (UK)
- European Foundation for the Care of Newborn Infants (EFCNI)
- March of Dimes (USA)
- Little Big Souls (Africa)
L’il Aussie Prems – (Online Support)
Australia’s online not for profit support site for parents and families of premature babies. You will find links to Australian premature baby support groups, clothing stores, read premature birth stories and blogs, see premature baby galleries, announce the birth of your precious premature baby and join a supportive community with parents from Australia and New Zealand to chat and share your journey through the NICU and beyond.
Proud sponsor of the National Premmie Foundation
www.lilaussieprems.com.au
Loddon Mallee Kids
Loddon Mallee Kids Inc (LMK) is a Not for Profit Organisation that is based in Bendigo, Victoria, Australia. Our aim is to provide support, information and resources to families and carers who are involved with parenting prematurely born and hospitalised babies.
Member of the National Premmie Foundation
www.loddonmalleekids.org.au
Moment By Moment
Born out of experience Moment by Moment offers clothing, information, support and beautiful ways to celebrate your journey no matter how far you have traveled. We strongly feel that all babies need to be celebrated, whether they go on to ‘grow up’ or whether they grow their angel wings early and watch over us. Please feel free to visit our site and honor your angel baby on this site as we read their story, their spirit lives on in us everyday. The site will be ever evolving to cater for premature babies. We will Endeavour to support everyone in your family during this stressful time.
NNICUPS
NNICUPS aim is to support parents before and after the birth of their baby and especially while their baby is in the Neonatal Intensive Care (NIC) Unit. Member of the National Premmie Foundation
PIPA
PIPA was formed in 1980 to provide a support network for the families dealing with the Premature birth of their baby in Queensland and Northern New South Wales Hospitals. For over 25 years this work has been carried on by a large number of volunteers Member of the National Premmie Foundation
The Featherweight Club
The Featherweight Club was established in 1994 to help the parents and families of premature and special care babies. The club is based at the Mercy Hospital.
Prem In Perth
Is run by mum, who’s daughter was born prematurely at 27 weeks. Prem in Perth is a personal journal and a growing source of useful information for families of premature babies born in Western Australia.
Perth Early Babies Group
Support parents and families of babies who spend their early days in the Neonatal Intensive Care Unit and Special Care Nurseries. They meet once a week for coffee and chat in the Special Care Parents lounge at King Edward Memorial Hospital, Perth.
Women Who Have Been there – Adelaide Support Group
Women Who Have Been There is a support group made up of Adelaide mums who have had their babies go through Neonatal Care. They support mums and families in the NICU & Special Care units and once they get home.
www.womenwhohavebeenthere.com.au
Lily May’s Little Things
Lily May’s Little Things based in WA has been inspired by the birth of the precious preemie, Lily May and preemie families in our community. The business is not set up to make a profit, it is has been set up to get a range of Preemie needs/wants together in one central place making it easier for preemie families to source. They also strive hard to promote and heighten awareness of Preterm Births.
www.facebook.com/lilymayslittlethings
Yasmine’s Gift of Hope
Yasminah’s Gift Of Hope is a support group based in New South Wales that offers Hope, Light, Love and Happiness to families who experience the miscarriage, premature birth, neonatal loss, stillbirth or infant loss of their child or diagnosis of a congenital abnormality during pregnancy with early ongoing support, understanding and a Gift Of Hope.
Our Little Fighters
A NSW group that supports families through the Journey of Premature Birth, through gift packages and hospital visits ….phone 0432534902 or email – ourlilfighters10@hotmail.com
www.facebook.com/OurlilFighters?sk=wall
Austprem
Austprem is an online support group. Those involved have all experienced, or been closely involved with the experience of prematurity. They aim to support in any way they can parents and caregivers of other premature infants and children.
Premmie Help
Preemiehelp.com is an internet-based information and community resource created by qualified preemie experts for healthcare professionals, parents, friends, and family interested in, or affected by, premature birth. Their primary objectives are to increase awareness about the important issues surrounding preterm birth and to provide expert, recent, and relevant scientific information in an easy to access, easy to understand format.
Bears of Hope
Bears Of Hope offers support and guidance for parents who experience the loss of their baby during pregnancy, birth or infancy.
http://www.bearsofhope.org.au/
Helping Hand Is Here
A site that wants to help equip you with as much knowledge about services relating to all children and youth with additional needs. Subscribe and stay informed about support, services, funding, programs, media releases, news, respite, organisations, recreation and videos relating to all children with additional needs.
Bliss
Bliss, the special care baby charity, provides vital support and care to premature and sick babies across the UK. Founded 30 years ago, we offer guidance and information at a critical time in families’ lives. We also fund ground-breaking research and campaign for babies to receive the best possible level of care regardless of when and where they are born.
March of Dimes
A leading American charity for pregnancy & baby health. Dedicated to improving the health of babies by preventing birth defects, premature birth and infant mortality.
The National Premmie Foundation is a proud Global Collaborative Partner of March Of Dimes.
www.marchofdimes.com/prematurity/prematurity.asp
PreemieCare
Is a american non-profit organisation dedicated to supporting families of infants born preterm through education, support, and resources. It also acts as a mentoring and networking organization for hospital and community-based parent-of-preemie support groups. It is a division of MOST (Mothers of Supertwins): a non-profit parenting organization that provides information, education, support and additional resources for families of multiples.
Irish Premature Babies
A voluntary organisation set up in Ireland by parents who have all had premature baby. They believe there is a need to support parents through the rollercoaster journey that ensues when your baby is born prematurely.
Little Big Souls
The Voice For The Premature Baby Born In Africa “In a world where our collective consciousness can turn the tides of human situations, in a world where one voice, audible enough, can set into motion a collective emotional, spiritual and physical change in circumstances and people we believe we can offer our precious Little Big Souls, born in less privileged parts of Africa, a fighting chance”.
The National Premmie Foundation is a proud Global Collaborative Partner of Little Big Souls
www.littlebigsouls.com
European Foundation for the care of newborn infants (EFCNI)
The European Foundation for the Care of Newborn Infants (EFCNI) is a network for those involved in the care of preterm or sick newborn infants as well as a forum for scientists. It was set up to bring about long-term improvements in the care of such infants. Give the largest group of child patients in Europe the attention and support it deserves.
The National Premmie Foundation is a proud Global Collaborative Partner of EFCNI
www.efcni.org
Hug a prem East Africia
A support group that look after families who have had a premature baby in Kenya & East Africa.
Email: hug-a-prem@gmail.com
Parent-Infant Reseach Institute (PIRI)
The Parent-Infant Research Institute (PIRI) is committed to supporting parents and infants (0-24 months) to enhance parent well-being and children’s healthy development through basic research and development of evidence-based interventions. It offers a unique contribution to early intervention in the development of a range of treatments to enhance parent and infant wellbeing.
Australian Multiple Birth Association (AMBA)
AMBA is a not-for-profit volunteer organisation that provides support, resources and education to families and/or carers with multiple births.
Multiple Birth Association of Tasmania (TasMBA)
The Multiple Birth Association of Tasmania (TasMBA) is a not-for-profit group which is operated by volunteer families who have multiple birth children.
There are three branches of the Tasmanian Multiple Birth Association, North West, North and South. Each of these areas runs activities which are centered around the needs of members within that area.
Multiple Birth Parents
Multiple Birth Parents is an Australian based online community forum for parents or carers of twins, triplets or a higher order of multiples.Whether you are already lucky parents of multiples or you are expecting special new additions into your lives then this is certainly the place to be. Multiple Birth Parents is a fun place to meet other parents who share the same experiences in raising multiples.
Premmie Baby Help
This site has been created for all families of Preemie babies. Having a baby prematurely is a very stressful time. The aim of the site is to provide a friendly environment for all parents.
Kangaroo Mother Care Promotions
Aims to promote the spread and implementation of Kangaroo Mother Care as the standard method of care for all newborn babies, both premature and full term. They aim to give firm scientific facts for medical and nursing professionals, and at the same time to convey these to all parents, to ensure babies get the best care.
Klokánkování / Kangaroo Care
Facebook Page dedicated to Kangaroo Care, provides some wonderful articles.
www.facebook.com/pages/Klokankovani-Kangaroo-Care/378186976810?v=wall#!/pages/Klokankovani-Kangaroo-Care/378186976810
Sklyer’s Gift
An American group that support families who have lost a premature baby and research to decrease premature loss.
Australian Breastfeeding Association
Information, support, discounted electric breast pump hire and a linked phone or email help line. ‘Breast feeding your premature infant’ booklet is available through their Mother’s Direct Shop.
Ph: 1800 MUM 2 MUM (1800 686 2 686) – 24hrs
www.breastfeeding.asn.au
Australian Lactation Consultants Association
National professional association for Australian International Board Certified Lactation Consultants.
Below is a link which will enable you to find a private lactation consultant near you.
Email: info@alca.asn.au
www.alca.asn.au/4059/Community/Find_a_Lactation_Consultant/
Express at home
Melbourne based breast pump hire service, delivered to your home or hospital
Ph: 0433 95 34 34 (24hrs)
www.expressathome.com.au
No fuss feeding and swallowing centre
Based in Queensland, they offer limited specialist clinical services, specialising in feeding & swallowing disorders in children and adults .
Tube Fed Kids
A social networking site for families and friends of tube fed children (past or present). This site serves as a good tool to share information and stories, help with tube feeding issues and most of all help with tube weaning issues. The transition from Tube Feeding to oral consumption is a long road for most children and their families
No Tube.at
Notube.at is the first website offering an effective online medical coaching service (netcoaching program) for children with early eating behavior disorders, particularly tube dependency. The Netcoaching program is based on the “Graz method of tube weaning”, through which more than 1000 tube dependent children over the past 20 years have been weaned successfully. Since the beginning of the Netcoaching program in summer 2009, 96% from a total sample of 92 tube fed children from all over the world have been weaned successfully.
Australian Support Network for Eosinophilic oEsophagitis and related disorders
Is an Australian charity who’s mission is to improve the lives of those affected by eosinophilic gastrointestinal disorders by providing support and information and to campaign and raise funds for further research in Australia.
Complex Child E-Magazine
Complex Child is a monthly online magazine written by parents of children with special healthcare needs and disabilities.
It is intended to provide medical information, along with personal experiences, in simple language that other parents can understand. Articles are on a wide variety of topics ranging from basic information on medical conditions and treatments to advice on how to beat insurance company denials.
HELLP Syndrome Society
A non-profit corporation whose mission is to raise awareness about the condition of HELLP Syndrome, raise money for research, provide support to families affected by this condition and conduct research on the condition.
Precious Premmies
Precious Premmies Lunch, a very special event to raise money for some of the most special little people, Premmie babies at the Mater Mothers Hospital in Brisbane.
Australian Action on Pre-eclampsia (AAPEC)
Australian Action on Pre-eclampsia Inc. (AAPEC) is an association incorporated in Victoria. It is a voluntary organisation set up to provide support and information to families who have suffered from pre- eclampsia.
The Pelvic Instability Association
(PIA) is a not-for-profit organisation, staffed entirely by volunteers, based in Victoria – Australia with members across Australia. They provide support and information to women and families affected by Pelvic Instability in Australia.
The Pelvic Instability Association Inc (PIA)
PO Box 449
Bentleigh,
Vic 3204
Ph: (03) 9539 3217
Bub Born Early
The Site for Bubs Born Early, their Parents, Family and Friends and Home to The BubBE Book…an NICU Journal. The BubBE Book and this site have been created to provide a source of information, inspiration, guidance and hope for the family and friends of Bubs Born Early, otherwise known here as BubBE’s.
Keep ‘Em Cooking
Keep ‘Em Cookin’ is an educational organization that gives pregnant women the greatest opportunity to prevent preterm birth by providing them with the most current information on high-risk pregnancy and by offering them online community support.
Mamas On bed Rest
Provide support, information, resources and services to high risk pregnant mamas and new mamas. They have a plethora of information on pre and post partum health, fitness, nutrition, advocacy, parenting and maternal and infant health and wellness.
Saying Goodbye
This is the first national set of remembrance services for people who have suffered the loss of a baby at any stage of pregnancy, at birth or in infancy. The services are free to attend and are taking place between March and December. There are over 20 locations in the UK and Internationally during 2013. See more details on website.
ReadyStepGrow™
ReadyStepGrow™ is a dedicated team of professionals enriching early learning and development for babies born preterm or sick. They know it is ‘experience’ that shapes the brain and our service is based on the brain’s amazing ability to rewire itself. The team at ReadyStepGrow understand the significance of prematurity and offer pathways to support parents and enrich early learning and development for babies, toddlers, preschoolers and school age Premmies. A Melbourne based organisation that provides psychology and education services: evidence-based knowledge, assessment, counselling and programs.
Eat Play Grow
Specialist feeding and developmental Therapy Program for Infants and Toddlers. The team work with families in the Bundoora, Vic area, to reduce the stress of feeding and mealtimes.
PANDA
PANDA is a Victorian, not-for-profit, self-help organization that was formed in 1985 to provide confidential information, support and referral to anyone affected by post and antenatal mood disorders, including partners and extended family members.
PANDA also produces and distributes accurate information about post and antenatal mood disorders to health professionals and the wider community.
Postpartum Progress
A site that provides Postpartum Depression help and hope from thousands of moms who’ve been there. We understand & we can help.
Not just about the wee
Yuz an LLTF mum has had two premature babies both born at 36wks. She is a PND/PPD/PPA survivor having been admitted to (as she says) the nuthouse following her daughters birth in 2009. This is her ongoing story & journey of both enduring & enjoying motherhood.
www.notjustaboutwee.com/ – Yuz’s Blog
Kids Plus Foundation
Provides intensive, paediatric therapy programs for babies, children and teenagers with neurodevelopmental disabilities, in particular cerebral palsy, the most common form of childhood physical disability.
This program works with children and their families in the Barwon Region to access regular, high quality therapy, which is crucial to long term outcomes developmentally, functionally and medically.
Cerebral Palsy Foundation
The Cerebral Palsy Foundation was established to take on the global challenge of finding the prevention and cure for cerebral palsy.
Cerebral Palsy Education Centre Inc (CPEC)
Cerebral Palsy Education Centre is acknowledged as a unique and successful specialist education service for children with cerebral palsy and their families.
My Child without Limits
MyChildWithoutLimits.org is designed to be an authoritative early intervention resource with a social networking element for families of young children ages 0-5 with developmental delays or disabilities, and professionals looking for a single, trusted, aggregate source of information that relates to their needs and interests. Looks at areas such as: Prematurity, Cerebral Palsy, Autism, Down Syndrome, Epilepsy, Spina Bifida, Hearing & Sight Loss, Rett Syndrome & Muscular dystrophy.
The Smile Foundation
The SMILE Foundation is a groundbreaking national charity that was established in 2007 to improve the quality of life of children with a rare disease or condition. SMILE provides financial assistance to families of affected children as well as supporting research relating to rare childhood medical conditions. SMILE is also committed to raising awareness of rare childhood diseases.
A Parents Guide to First Aid
In homes where there are small children, safety is an important issue. Parents want to protect their children from all potential dangers and will most often take steps to make their home as safe an environment as possible. This site covers areas such as How to Keep Your Home Safe, How to Teach Your Child About First Aid & Emergencies and
First Aid for a New Parent with useful tips and factsheets.
http://www.acls.net/a-parents-guide-to-first-aid.htm
Gateways
For families in the Barwon-South Western Region. Services are provided to children with developmental delay, autism spectrum disorder or a diagnosed disability, and their families.
Services include autism assessment and diagnosis, early intervention services, preschool support and inclusion, and assistance with transition to school planning.
www.gateways.com.au
Kildonan Uniting Care
Kildonan Uniting Care is one of Australia’s oldest community organisations. They provide a hospital based fianancial counselling service at the Royal Children’s Hospital.
www.kildonan.unitingcare.org.au
Raising Children Network
The Australian Parenting website, an excellent resource for any family.
Busy Mothers
A parenting website by busy parents for busy parents. We have a wealth of information available to make life easier, simpler and less chaotic. Busy Mothers is home to The Busy Mothers’ Companion a resource to help parents manage their busy household.
Pregnancy, Birth & Beyond
Up-to-date and extensive source of information and support for pregnancy, birth and parenting. Pregnancy, Birth & Beyond supports independent midwifery services and quality childbirth education.
Through this website you will be able to find lots of information on midwifery care, pre-conception care, pregnancy, birth, waterbirth, homebirth, vaginal birth after caesarean, postnatal care and breastfeeding.
Mamas Group
A social network created especially for mums. Find out what activities and support services are available in your area, chat to other mums.
Kids First
KIDS FIRST is a course designed to provide parents and carers with children aged 0 – 12 with the skills to provide basic First Aid and emergency care for children. If you are a new parent or are responsible for the care of young children the you owe it to those loved ones to know what to do in and emergency, because when it comes to saving a life MINUTES MATTER.
Huggies Australia
Join the Huggies Baby Club for special offers, baby information, fun & games!
Info4Carers
As parents who care for children with a disability, Tanya & Michelle felt compelled to compile their thoughts, ideas and experiences to help other families navigate their way through what can only be described as the ‘maze’ of disability services. They have written You are Not Alone – A Carers Journey to provide guidance and advice to parents and carers centred on a child’s early years, from birth to six years of age.
www.info4carers.com/index.php/you-are-not-alone.html
Little Aid
First aid training for parents, grandparents and babysitters. They are a leading provider of quality first aid training and products that are baby and child specific.
Kids In Australia
Kids In Australia is a resource and information website which has been designed by parents, for parents. They have done it all for you and wrapped it up in this comprehensive, easy-to-use and fun website. Their Mission Statement is to connect parents with businesses and information which can help smooth the path to raising healthy, happy and confident kids.
Ph: 1300 170 020
www.kidsinaustralia.com.au
www.facebook.com/kidsinaustralia.com.au
Financial Guidance
Dad Shane Graham, who himself has had a prem baby little Isla, is a financial planner and works with other charities helping families on a pro bono basis, he is very keen to assist any families who have had a premature or sick baby and are struggling with finances. Doesn’t matter where you live, he can travel or speak with you over the phone. He understands the financial strain that a family can experience when having a prem or sick baby.
Details:
Shane Graham Dip FS(FP) AFP®
Financial Planner, Authorised Representative of A.M.P Financial Planning Pty Ltd
A.B.N 89 051 208 327 A.F.S Licence No. 232706
Swan Hill Office:
12 Pritchard Street, Swan Hill, VIC 3585
Ph: (03) 5032 9111
Email: shaneg@gmgfg.com.au
Web: www.gmgfg.com.au
LaDeDa Professional Photography
Shoshanna Sibony is a professional photographer based in Melbourne, offers her “Little Hugs” service – For families of extremely premature or seriously ill bubs and kids, they offer a FREE photography shoot.
www.ladeda.com.au/index.php/
Tiny D’s Photography – For your little Miracle
Katia de Santis is a Melbourne photographer who’s son, Dante, was born at just 29 weeks last year and subsequently spent two months in the neo-natal intensive care unit (NICU), she provides free photography sessions for families with babies in NICU or Special Care or who are sick, free of charge.
Vivenda
Vivenda is here to make your life easier and tastier. They prepare meals for you & your family in your own kitchen, for those times when you just can’t…their food truly is homemade. You and your family will then be able to pick the meals that set your taste-buds tingling from a yummy menu. Sarah prides herself on her flexibility, so if you prefer, she would love for you to request a family favourite that is not on this list of suggestions. You will also be invited to let them know if you have any preferences such as free-range or organic, any allergies or intolerances. Give Sarah a ring on 0488 725 211 or email: sarah@vivenda.com.au
