Welcome to the Parent Resource CenterThis website is for parents and caregivers of children with glaucoma. You will find Support, Information, Tools, and Educational resources about childhood glaucoma and the special needs a child with glaucoma may have. Our goal is that you will be enlightened, empowered, and encouraged to take an active role in caring for your child with glaucoma so they can receive the best care possible. For a list of topics, click on the menu on the left side of this page. Childhood glaucoma is a complex, chronic condition. Facing this disease can be scary, and it will have its ups and downs. One of the most important things you can do for your child is to be educated about childhood glaucoma – the disease, the treatment, and the special needs a child with glaucoma may have. With knowledge you have power to know what questions to ask and to make informed decisions. You know your child best, and you are his/her best advocate. Family, siblings, teachers, and health care providers are all important members of the team caring for your child. Working together to support the needs of your child will help you successfully manage your child’s glaucoma. Childhood glaucoma is a chronic condition that requires lifelong care. One parent shared this advice: “Childhood glaucoma is not a sprint, it’s a marathon. Pace yourself – don’t look too far down the track. Focus on the now and not on the questions no one can answer. Celebrate the wins, no matter how small.” No matter where in the world you live, parents of children with glaucoma share a common bond; however, resources available to support a child’s needs do vary significantly from country to country, and state to state. We try to provide a resource of ideas and practices that will be useful to parents around the world, so that you know what questions to ask to find services available closest to where you live. Getting the services your child needs is not always easy – it may take a lot of your time and energy to get what you need. The effort will be worthwhile. We also encourage you to reach out to online communities you will find on this website to learn from those who have been down the road of childhood glaucoma. They are a wonderful source of encouragement and inspiration. We provide links to resources and/or services provided by other organizations for your convenience. The resources provided on this web site are not intended to be complete listings, nor are they intended to be an endorsement of any organization or product. This website does not provide specific medical advise and is not a substitute for professional care. The information and links we provide are reviewed by the Childhood Glaucoma Research Network advisory committees. The CGRN is comprised of pediatric ophthalmologists and glaucoma specialists around the world specialize in treating glaucoma in children, and the website review committees also include educators, parents, and pediatric low vision specialists. We want to keep improving the webSITE so it can better meet your needs, so we hope you’ll take a minute to fill out our online survey. |