Preemie Parent Alliance Resources

We are pleased to list the following organizations and websites as a public service. They are not endorsed by JF&CS or the Fragile Beginnings Preemie Parent Alliance and this is not an exhaustive list. If you would like to add or edit any information, please contact us.

Preemie Parents Support

National

About.com Preemies Provides videos, reviews of preemie websites including clothing, articles on NICU care and bringing the baby home. Check out the article, “Premature Babies Week by Week” to explore what babies born at certain gestational ages look like.	Preemie Care Provides general information about premature infants and health risks. This is a division of MOST (Mothers of Supertwins).
Baby First Provides parents of preemies and providers with information on a variety of topics. For parents, this includes general information on preterm birth, helpful information for the NICU stay, glossary of terms, information for after NICU discharge, family stories, and resources. For providers, this includes specific issues such as thermoregulation and jaundice management.	Preemie Parenting Provides a list of online and off-line support groups and resources for the parents and loved ones of preemies.
Graham’s Foundation Provides care packages to families in NICU as well as blogs and an extensive resource guide.	Preemie Voices Provides an advocacy toolkit and up to date information on current issues.
Inspire: Online Preemie Support Group Provides an opportunity to share your questions and stories with other parents that have gone through similar situations with their own preemies; this includes support for families who have experienced loss, families whose infants are still in the NICU, and parents of older children who were born prematurely.	Premature Baby, Premature Child Provides information on long term impacts of prematurity, information on delivery and an opportunity to share your child’s story and accomplishments.
March of Dimes: Share Your Story Provides an online community of parents whose infants have spent time in the NICU that allows you to share your story, as well as to gather strength, information and support from other parents.	Prematurity Networks Provides patient education materials for preemie parents on a variety of relevant topics and links families to the regional prematurity network in their area. The site is sponsored by MedImmune Advocacy.
Mothering: NICU & Preemie Parenting Provides community discussions, blogs, and opportunity to ask questions.	Spenser’s Hope Provides information on common diagnoses and the experience of the NICU.
National Preemie Families Support Network Provides activities to support child development, a list of resources, a blog, parent-to-parent telephone line, online hat support, newsletter and online community. The organization is based out of Washington DC.	Tiny Miracles Foundation Provides resource information including a glossary of NICU terms. The organization is based out of Connecticut.
Preemie Babies 101 Provides information on preemie care before and after the NICU, a glossary of terms, a monthly newsletter and a slideshow of pictures.	The Zoe Rose Memorial Foundation Provides services and information to educate, support, connect, comfort, and empower the families of micro preemies.

Massachusetts

General Parenting Support

National

Massachusetts

Birth to Three Family Center Provides education to parents, play groups, and parent workshops. This organization is located in Ipswich.	Massachusetts Healthy Families Provides a home visiting program that serves first-time parents under 21 years of age. See website for contact person and location of local program.
Boston Mamas Provides a local blog with information about family activities in Boston and the opportunity to meet up with other parents in the area.	Massachusetts Family Centers Provides a location to meet up with other families, get support and training, as well as get connected to other local resources. See website for contact person and location of centers.
Centros Las Americas Provides parenting skills and parent support group for Latino families in the greater Worcester community.	One Tough Job Provides current practical advice on topics for parents of children of all ages; also available in Spanish. This was created by the Massachusetts Children’s Trust Fund.
Child Care Resource and Referral Agencies Provides community specific information on local day care, family care and preschools area as well as a source of information for groups that prepare families for school.	Parents Helping Parents Provides support groups, parent stress line, and a list of resources for various parenting issues.
Children’s Friend Provides grief counseling, family counseling and other programs for families in central Massachusetts.	Federation for Children with Special Needs Provides free workshops and information for parents of children with disabilities or special health care needs.
Children’s Trust Fund Provides information on statewide Healthy Families program for teen parents, parent education, family training centers and family centers that provide support to families around Massachusetts.	Pernet Family Health Services Provides a variety of services including parent skills training to parents under 23 years of age and home care assistance for mothers who have young children or are pregnant, located in Worcester.
The Family Center Provides immigrant families and families in crisis with family therapy, parenting training and parenting support groups, serves family in the Greater Boston Area.	Pregnant and Parenting Teen Initiative Provides support and resources to pregnant and parenting teens and young adults, designed to increase parenting skills, complete high school education and delay future pregnancies.
Families United Network Provides parent support groups, free activities for families, parent classes and information on resources in the Cape Cod area.	Southeast Asian Coalition of Central Massachusetts Provides assistance to Southeast Asians in the areas of educational and job training, economic, as well as emotional, social and cultural support, including a parenting support group.
Freedman Center for Child and Family Development Provides information for new parents and runs several new parent groups in greater Boston.	Talk, Read, Play Provides activity ideas that support child development, including activity and milestones guides in eight languages.
Head Start and Early Head Start Provides a listing of the statewide programs of Head Start, a program for preschool age children to help prepare them for school, and Early HeadStart, a program for children birth through three that nurtures early literacy and early language skills.	Worcester County Father and Family Support Network Provides resources for fathers including a list of available resources, a suggestion of providers for supports for fathers, social activities and monthly meetings.
Isis Parenting Provides classes, workshops, drop-in groups and instructional videos online ranging from free to fee based. Centers are located in Boston, Brookline, South Shore, Arlington & Needham.	YOU, Inc Provides parent to parent support in central Massachusetts.
Jewish Family & Children’s Service Center for Early Relationship Support Provides services to new families through Visiting Moms, free weekly support groups, Healthy Families, parent consultations for sleep, behavior and other parenting questions, therapeutic resources for postpartum depression, and other programs.

Early Intervention

National

Massachusetts

Special Health Care Needs

National

Massachusetts

Financial Assistance

National

Massachusetts

Emotional Health (postpartum therapists, etc.)

National

Massachusetts

Preemie Clothing

National

Mothers of Multiples

National

Massachusetts

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Attachment Parenting International Provides education and support of parents in ensuring that an infant develops a secure attachment to his or her caregivers in order to support the infant’s emotional and social development.	Healthy Children Provides articles on parenting and topics that are important to parents and information on raising healthy children through prenatal to 21 years. Website is associated with the American Academy of Pediatrics. A search under “preemies” reveals many articles specifically directed at parents of preemies.
Café Mom Provides an online community and information for mothers.	Moms Rising An organization that advocates and raises awareness on parenting issues.
Child and Family Webguide A searchable directory that evaluates and provides links to hundreds of websites that are based on research in child development and provide practical advice to parents. Parents can search for current information on particular diagnoses.	Zero to Three Provides information on behavior, your child’s development, finding childcare and your child’s education.
Dr. Sears Provides information on various aspects of child development and medical issues. A search under “preemies” reveals information on various issues regarding premature labor and premature infants, excellent care advice for mother’s in high risk pregnancies as well.

Early Intervention Parent Leadership Project Provides information about family rights, individual family service plans, descriptions of relevant laws, and so much more information as a user friendly website. A link to a newsletter with updated information in EI is also offered on this website. Some information is also provided in Spanish.	Massachusetts Family Ties Provides general information on eligibility for services, a description of Early Intervention, and listing of Early Intervention providers by city.
Massachusetts Department of Public Health: Early Intervention Provides information about eligibility, family rights, family involvement, individualized family service plans, payment, and information on programs and quality assurance.	Early Intervention Training Center Provides free workshops, information, and training for Early Intervention specialists, professionals, and families that leads to certification. Also provides information on other workshops around Massachusetts.

Aaron’s Tracheostomy Page Provides parents of children who have a tracheostomy with information about home care techniques, advocating for your child and finding a large nationwide support group for families of children who have tracheostomies.	Association for Retinopathy of Prematurity and Related Diseases Provides information about ROP, with book lists (for children and adults) and one Mom’s story.
Ability Path Provides support for parents of children with special health needs including information on diagnoses, developmental milestones and information to maximize your child’s development.	Kids Health for Parents Provides information about checkups, medications, safety checklists and parenting support for all topics – behavior, emotion, learning and health conditions. By searching for premature or “preemie” on the site a wide variety of topics are covered including common medical diagnoses.
Allergy and Asthma Network & Mothers of Asthmatics Provides information to families of children with severe allergies and asthma, including advocacy in the schools, changes to the home, FAQ, medications and the newest in research and technology.	Neonatology on the Web Provides a resource guide to medical diagnosis information on various websites using the clinical directory as well as information on the technology and equipment used in the NICU.
American Academy of Pediatrics Provides information on medical conditions, specialists, treatments and the latest research.

Boston Medical Center Pediatrics – NICU Follow-up Clinic	Mass.gov: Division for Children with Special Health Needs Provides information on general health needs like immunizations and pregnancy as well as providing links for important information for families of children with special health care needs, including care coordination, palliative care, mental health, early intervention, and financial support.
Children’s Hospital Boston Infant Follow-up Program	My Comfort Cuts Provides hair cutting services in your home for children with special health care or sensory issues.
Family TIES of Massachusetts Provides information and referral services, emotional support, and trainings to parents of children and youth with special needs, including a very comprehensive, online resource directory.	Tufts Medical Center Newborn Follow-up Program
Massachusetts Family to Family Health Information Center Provides free information about health care financing, early screenings, navigating community services, creating family/professional partnerships and more.

Catastrophic Illness in Childhood Relief Fund Provides a reimbursement program for families that have incurred excessive medical bills and have needs beyond the financial support of state and private funding resources.	Mass.gov Support Services Provides information on Massachusetts resources for financial assistance; such as cash for food and nutrition, housing and shelter, transportation, etc.
Mass Legal Help Provides information on the financial assistance programs for low income parents.	MA DPH: Women, Infants and Children (WIC) Provides information for financial assistance for mothers to buy healthy foods and baby formula, as well as breastfeeding support.
Mass Resources Provides an online resource guide for financial support services that help in paying for various services, including cash assistance, education, child care, health care and utilities.

Cape Cod Neighborhood Support Coalition Provides information and a list of therapists and whether or not they accept public insurance for the Cape as well as basic information on postpartum.	Mother Woman Provides support groups as well as a resource and referral guide for mothers needing mental health or postpartum support, located in western Massachusetts.
Clinical and Support Options, Inc Provides mental health supports families and children in Worcester.	Northshore Postpartum Depression Task Force Provides information and education to mothers, family and friends as well as providers in the northshore area.
Jewish Family & Children's Service Early Connections Provides a therapeutic program for families that are dealing with postpartum issues such as depression, anxiety, or difficulty bonding with the baby, including home or office visits as well as a free weekly postpartum depression support group.	Postpartum Support International of Massachusetts Provides listing of support groups, professional therapists and has a free hotline to call if you just need to talk.
Mass General Hospital Center for Women’s Health Provides information on post-partum disorders and psychiatric disorders during pregnancy.	Project Interface Provides a regional breakdown of mental health and wellness resources in Massachusetts.

The Preemie Store Sells clothing in sizes from 1 lb – 9 lbs, prices include FREE SHIPPING!	Preemie Proud Sells clothing in sizes from 1 lb – 7 lbs, blankets, toys and share your story.
My Miracle Baby Sells clothing for sizes 3-6 lbs and includes clothing for full term newborns and toddlers.	Preemie Yums Sells custom cut clothing from preemies from 0 – 11 pounds, seasonal fashions and several other companies clothing for micro preemies through nine month olds.
Nurture Place Sells NICU+Safe clothing in 1-10 lbs, as well as newborn clothing 1-11 months.	Tummy Tunnels Sells a device that allows g-tubes and other medical tubing to pass in and out of any clothing.
Perfectly Preemie Sells clothing in sizes 1 lb-9 lbs including clothing designed specifically for use in the NICU to provide easy on/off and access to various lines. Also sells caps, booties, diapers, blankets, bottles, pacifiers and car seats specifically designed for preemies.

About.com on Multiples Provides the opportunity for you to ask questions, share your story, and learn about twin, triplet, and higher order multiples.	Mothers of SuperTwins Provides support, education, and research on higher order multiple births, including online support forums for parents of multiples.
Just Multiples Sells items for twins and triplets including, books, strollers, clothing, birth announcements, and jewelry.	National Organization of Mothers of Twins Club Provides support and information for parents of twins and higher order multiples, including member clubs across the nation.

Keeping Pace with Multiple Miracles Provides boot camp for expectant parents; support groups for families expecting and raising multiples; a second hand consignment shop for clothing, toys, and equipment; and babysitting and nannying services. This organization is located in West Bridgewater.	Nashoba Valley Moms of Multiples Provides support for mothers and fathers of multiples including guys night out, girls night in, play groups, meetings, and family events.
Massachusetts Mothers of Twins Association Provides a list of all the local mothers of twins groups and supports such as monthly newsletters, playgroups, Moms nights out, bed rest buddies, as well as access to a preemie closet, yard sale, and lending library for gently used items for multiples.