We are Empowering Preemie Parent Communities Worldwide

The Alliance for Black NICU Families™ seeks to raise the voice of black families in the NICU and post-NICU in terms of creating racial and health equity through policy advocacy,  professional educational initiatives, family educational initiatives, leadership mentoring of up and coming African American-led organizations and public outreach for assistance.   Programs include FREE Wearable Breast Pump, Policy Change, and Micro-Grants. 

Unifying Neonatal Nurses Globally.

• Excellence in newborn care through evidence, research and education of Neonatal Nurses.
• Advocacy of high quality newborn care by promoting global health of newborns and their families.
• Respect for diversity by integrating cultural norms and values among health care of newborns and there families.

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.

Started by Deb Discenza in 2005, the Inspire Preemie Community has grown to be the largest discussion forum globally around prematurity in and out of the NICU.  

Sample discussion rooms include:  VIP (Very Important Preemie); In the NICU; Post-NICU, Preemie Pregnancy, NEC; At School, Adult Preemies Connect; Preemie Dads, Preemie Tips, Preemie Angels and much much more.  Joining is FREE!  Sign up today and post a message introducing yourself.  

The Journal of Health Design (JHD) is a peer-reviewed scientific publication. We aim to publish papers describing the development and evaluation of innovations to improve the patient experience of health care.  We are especially interested in measures that do not require major Health Policy change. 

The JHD espouses two motos- Better health by design and small change big difference. Most of our publications tackle challenges with particular reference to the end user of health services. The JHD offers expert opinion and thought leadership and has a global outlook.

Key to CP provides an in-depth, comprehensive assessment of the client’s function and development, followed by best-practice interventions, a detailed discussion of the client’s goals, and any concerns the client or clients’s parents or caregivers 

may have.

Our program follows a model developed by Karen Pape, MD and Pia Stampe, PT, DPT. During every step of the assessment and intervention, we ensure that the client fully understands how CP impacts their motor skills, vision, speech, feeding, and cognition function. Goals will gradually emerge as we uncover their best performance.

We believe when mothers thrive, we all thrive.  While new life can bring joy and anticipation, it’s a journey that can take a toll — physically, mentally, emotionally, and beyond. Through the joy and hope of it all, the doubt, the sleepless nights, and every moment in between, we want you to know…we see you. We’re fighting for you. We’re your ally on the journey — every step along the way. 

From the very beginning we have developed safe, innovative products to support new families - and now we are determined to have a positive impact and support a healthier future for them too.

Every sustainability commitment we make is driven by science and supports the United Nation’s Sustainable Development Goals.

Our future, our families’ futures, and the future of the planet all depend on the actions we take today.

NICU Parent Network is the premier US-based professional organization of NICU Parent Leaders who collectively represent the needs and best interests of NICU families.  

Together, we envision a world where every NICU family is an essential and integral member of their baby's care team.

PreemieWorld Foundation is a founding member organization of NICU Parent Network.  Feel free to ask Deb more about this amazing, collaborative organization for NICU Parent Leaders.

'Little Man' is the story of how a micro-preemie brought a family to its knees. Throughout his struggle for life, so struggle filmmaker, Nicole Conn and political activist Gwen Baba to keep their family from disintegrating under the unrelenting stress and chaos of hospitals, emergency medical crisis and a crushing blow to trust.

Nicole is co-author to The Preemie Parent's Survival Guide to the NICU with PreemieWorld Foundation, Inc.'s Deb Discenza.

We are the FIRST, FREE, INTERACTIVE, MULTI-MEDIA online, mobile-friendly publication serving the special needs community. With Parenting Special Needs Magazine, you can:

• LISTEN to the articles
• READ the text and tips
• WATCH the online videos
• CONNECT with the direct links
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In other words – we are here – how, where, and when you need us.

The Brazilian Association of Parents, Families, Friends and Caregivers of Premature Babies (ONG Prematuridade.com) was born from the experience of parents and health professionals with prematurity and its consequences, in November 2014. We are the only national non-profit organization dedicated preventing premature birth and guaranteeing the rights of premature babies and their families.