The Importance of Braille For any child with a rare disease that leads to blindness or visual impairment such as Stargardt disease, Usher Syndrome, Alström syndrome, or Retinal Blindness life…
Stargardt Disease Stargardt disease is a rare condition that causes vision loss due to the buildup of vitamin A byproducts in the retina. The byproduct causing the largest buildup is…
May is Healthy Vision Month! Rare disease or not, maintaining healthy eye health should be a priority for all of us. The National Institute of Health has resources for not…
Stargardt Disease Stargardt disease is a rare disease which results in progressive vision loss. It is also referred to as juvenile macular degeneration. Most often, the disease presents during childhood.…
The longer patients live without a diagnosis, the longer they are living without the proper care and the proper treatment. The problem is twofold when a patient is diagnosed incorrectly.…
The United States Food and Drug Administration has awarded twelve research grants worth a total of over $18 million for research into rare diseases. For more information about this news,…
According to a story from Eye on the Cure, the biopharmaceutical company Ophthotech is hard at work researching and developing gene therapy solutions for a variety of rare retinal conditions.…
The United States Food and Drug Administration has awarded Rare Paediatric Disease Designation to an experimental drug for the treatment of Stargardt disease. For more information, you can find the…
According to a story from pharmavoice.com, a new partnership between the biotechnology company Vitrisa Therapeutics and the Foundation Fighting Blindness Clinical Research Institute (FFB-CRI) is in the works in order…
According to an article from bioportfolio.com, the pharmaceutical company Ophthotech announced that the first of its patients are being enrolled in its Phase 2b clinical trial. This trial is meant…
I hear a lot of talk about technology these days. There seems to be a growing group of people who argue that it creates more problems than it solves. It…
I second-guess every decision I make. Should I wear my hair pulled back, or will it just flop in my face all day long? Should I wear heels and risk…
“Don’t fight the problem, decide it.” George C. Marshall was not known for backing down from any fight. It was most certainly drummed into him from his military training, but…
There are certain doctor’s appointments that I dread. The top three appointments that can cause me to lose sleep include annual OB/GYN visits, mammograms, and eye exams. For me, my…
In 1901, a German ophthalmologist named Karl Stargardt reported the first case of macular degeneration in a child. Today, we know this is very rare in children. Approximately one in…
Alfred, Lord Tennyson wrote, “’Tis better to have loved and lost than never to have loved at all.” This may be true for love. If you have loved before, you…
Whether it’s hiking the rainy hills of Kauai, sleeping over the water in Bora Bora bungalows, exploring inside Neuschwanstein Castle in Germany, or looking over the picturesque Matterhorn, there are…
“Whoever you are, I have always depended on the kindness of strangers.” Blanche DuBois may as well have delivered this as a tagline for every charitable organization in the world.…
About four years ago, Sagar Baheti found out he had an eye condition called Stargardt disease. Initially, he was not alarmed by the small symptoms that indicated Stargardt. He did…
Being married to the love of your life would mean that you know everything there is to know about one another. Physically, emotionally, and mentally. Right? Well, Gene is married…
I love to read a good story about someone overcoming the odds. A young man living with Stargardt disease has done just that this month! He is the first Indian to…
I always love to read a heart-warming story. To me there is nothing greater than when family comes together during a hard time. That is exactly what two brothers did.…
Discovery Phase Drugs for Orphan Eye Diseases IVMED-100- 80- 90 are currently without generic drug names. They are under development for the treatment of orphan eye diseases by iVeena, LLC who has 6…
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