Resources for Families of Children with Retinopathy of Prematurity (ROP)

These resources are from Prevent Blindness

The National Center for Children’s Vision and Eye Health at Prevent Blindness offers resources on your child’s developing sight, including approaches you can take to support vision and eye health throughout their life.

Prevent Blindness offers information on a variety of children’s vision conditions, financial assistance resources, advocacy training through storytelling, and support for individuals with vision loss and their care partners.

These organizations provide support and resources for families of children with ROP, other vision conditions, and infant health

Hand to Hold provides resources and support to parents during and after their babies leave the NICU through virtual peer support groups, parent-to-parent mentoring, an app, counseling, educational materials, and podcasts.

The National Coalition for Infant Health provides resources and education promoting patient-centered care for premature infants and their families.

The American Academy of Ophthalmology (AAO) provides information on treatments for ROP and resources for finding an ophthalmologist in your area.

The National Eye Institute provides information about ROP and current research.

March of Dimes provides support for families of premature infants in the NICU, as well as advocacy, research, and lifelong support for issues related to prematurity, maternal and infant health.

Healthychildren.org provides information for parents on newborn eyesight and warning signs of vision problems in children.

Blind Children’s Resource Center is dedicated to helping visually impaired children be independent, functional members of society.

Infantsee® provides no-cost comprehensive eye and vision assessment for infants 6-12 months old regardless of a family’s income or access to insurance. The website includes a parent center with helpful information on baby’s developing eyes, what to expect at an appointment, and other ways to help with infant vision development.

These organizations provide support for families of children with special healthcare or learning needs

SPAN Parent Advocacy Network empowers families as advocates and partners in improving education, health/mental health and human services outcomes for infants, toddlers, children, youth, and young adults. SPAN works in New Jersey and nationally to provide resources, support, leadership engagement and training, and advocacy for families of children and youth with special health care needs.

Parent Training Information Centers (PTIs) located in each state provide education and training to parents of children with disabilities up to age 26.  PTIs help parents participate effectively in their children’s education and development and partner with professionals and policy makers to improve outcomes for all children with disabilities.

Family Voices is a national family-led organization of families and friends of children and youth with special health care needs (CYSHCN) and disabilities which provides support to families of CYSHCN. Family Voices offers state affiliates as well as opportunities to develop leadership skills for families, particularly those from underserved and underrepresented populations. Family Voices has state affiliate organizations to assist families.

Family-to-Family Health Information Centers (F2Fs) located in each state are family-led organizations that provide engagement and support to families of children and youth with special health care needs (CYSCHN).