Listservs and Parent Groups
A listserv for parents of children with Retinopathy of Prematurity.
A listserv for parents of children who are blind or visually impaired moderated by an adult with ROP. To subscribe send a blank email to the following:
A blog on retinopathy of prematurity
A generalized listserv for parents of children who are blind or visually impaired
A listserv for parents of children with persistent hyperplastic primary vitreous (PHPV) ALSO KNOWN AS PFVS or persistant fetal vasculature syndrom
A listserv for parents of children with familial exudative vitreoretinopathy
A Website created by a parent with excellent resources for other parents.
A website dedicated to providing information and support to individuals with Familiail Exudative Vitreoretinopathy.
A listserv for families of children with retinoschisis
A website dedicated to providing support and information for individuals with Norries Disease
American Foundation for the Blind (AFB) and the National Association for Parents of Children with Visual Impairments (NAPVI), have created an interactive
website with an abundance of useful information and and message boards that are specifically related to a variety of eye conditions, including ROP.
Tele-Support Groups for parents of children with visual impairment are open-ended, informative and supportive discussions of issues
and topics of concern for parents raising children with visual impairment. These groups are composed of parents with children who
have the same eye conditions. They are professionally facilitated and are offered at no cost to parents. They meet by phone on a weekly basis.
A listserv for adults with retinopathy of prematurity.
National Association of Parents of the Visually Impaired (Napvi)
NAPVI is an organization of parents whose children are visually impaired. The group provides information, resources and the opportunity to meet with other parents at their conferences. For more information they can be reached at (800) 562-6265.
National Federation of the Blind - Parent of Blind Children (NFB-POBC)
NFB is an organization composed of blind adults. Their parent division is NFB-POBC. This organization has been extremely active in advocacy for the rights of adults and children who are blind. They can be reached for further information by email email@example.com.
New telephone support group:
A national telephone support group for parents of young children with Retinopathy of Prematurity is beginning in January of 2007. Facilitated by a psychologist, the support group is being sponsored by the Jewish Guild for the Blind, a member of NAPVI. The Guild is a nonsectarian, not-for-profit vision health care agency located in New York. There is no cost to the parents who participate and groups will be conducted weekly by calling in to a toll-free number at a time that is most convenient for the majority of the participants. For more information, or to register for this group, please call 1-800-915-0306.
A website dedicated to parents of premature babies with a wealth of suggestions.
A wealth of information with links to the Wonder Baby Blog. Sign up for email updates.