אנו שואפים לחסל באופן גלובלי עיוורון ילדות מוקדם למניעה. החזון שלנו: למנוע מילדים לאבד את שלהם.
אנו מעלים את המודעות הציבורית לזוהר (לויקוצוריה) ויותר מעשרים מחלות עיניים שונות הקשורות לזוהר ונוהגים לפעול למניעת עיוורון בילדות.
אנו עוזרים להורים לראות את החזון של ילדם באור חדש. כי אף ילד לא צריך לתעוור ממחלת עיניים הניתנת למניעה.
Beyond The Glow was created for families because often our journey does not end with detecting the glow and getting treatment, but can in fact create a lifetime of learning how to navigate an eye condition. Christina Gill recognized there was a need for extra resources for families, especially children that were not able to communicate yet. Having a toddler who cannot fully articulate his needs and how he feels has sparked the idea of one resource page directing to so many different great resources that are available for families. This is a constantly evolving resource page and we encourage you to share with us resources that you have felt useful on our Know The Glow Community Facebook page.
Websites To Check Out!
Prevent Blindness has declared 2022 the “Year of Children’s Vision.” The goal is to highlight and address the diverse and critical vision and eye health needs of children and to improve outcomes through advocacy, public health, education, and awareness. Check out this page for more about this initiative and additional resources.
NORD’s Rare Disease Database provides brief introductions and related links for patients and caregivers to various rare diseases.
Ocular Prosthetics, Inc.’s specialized team of Board Certified Ocularists design, fabricate, and fit prosthetic eyes for individuals who have had their eye removed by an enucleation or evisceration surgery. Also offers insight into past patient’s journeys with losing an eye.
Simple search tool to locate nearby doctors specifically for retinoblastoma
Provides a series of resources and programs to connect, empower, and inspire individuals afflicted with a rare disease. Look at Global Genes’ Empowered Patient Toolkit for tangible ways to advocate as a caregiver or individual with a rare disease.
Founded by Shelby Perry, Eyehesive provides an online community, empowerment program, adhesive eye patches, and additional resources for individuals with eye loss.
This site has been established by ocularists to provide relevant information and support for people who require an artificial eye.
Communities To Explore!
Facebook reached over a billion monthly active users in September 2012, making it easy for users to find and connect to others through supportive community groups.
Google Groups lets users participate in online discussions. Connected to Google, this social media site allows users to stay organized.
Inspire connects patients, families, friends, caregivers and health professionals, providing health and wellness support.
Patients Like Me
Users can join this registry to connect with others in similar situations. Access this site to read through other patients’ stories, learn from their experiences, and share your own.
Hosted by trusted patient advocates, this is a place where rare disease patients can connect with others globally. Joining or forming a group through Rare Connect can helps users provide support to others, while learning from their experiences.
RareShare is a social hub that helps build communities for patients, families, and healthcare professionals affected by rare conditions.