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Displaying 41–50 of 395 diseases results
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Jul 10, 2023
Blind Author with Usher Syndrome Ignites the Literary World
At the age of 22, Michael Garrigan received a life-changing diagnosis of Usher syndrome type 2. His vision gradually deteriorated over the years, and by the age of 45, he faced the reality of being legally blind. Determined to share his story and shed light on the capacity to triumph over darkness, Michael penned a remarkable memoir, “Ushered Out of Darkness,” in which he invites readers into his most vulnerable life moments and victories.
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Jun 29, 2023
The five-year grant will advance the emerging treatments toward clinical trials
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Jun 19, 2023
Beyond Labels: The Inspiring Journey of a Refsum Disease Advocate
After years of seeking answers, Alan Gunzburg was formally diagnosed with Refsum disease, a rare genetic disorder. Drawing on his unique journey, Alan sheds light on the obstacles he’s faced and how his experience motivated him to make a positive impact in the lives of others.
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Jun 12, 2023
Beacon Therapeutics to Advance XLRP, Cone-Rod Dystrophy, and Dry AMD Gene Therapies
An emerging XLRP gene therapy acquired from AGTC is the company’s lead clinical program
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Jun 5, 2023
Breaking Barriers as an Attorney With Usher Syndrome
Tara is a woman of extraordinary talents. A beloved twin sister, mother of two, and wife of 10 years, Tara leads a fulfilling life dedicated to advocating for others through law.
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Jun 1, 2023
Coave Reports Encouraging Phase 1/2 Clinical Trial Results for PDE6B Gene Therapy
The company is expanding the trial to enroll younger patients with less advanced disease
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May 12, 2023
Lindsey Blankenship, president of the Foundation Fighting Blindness Colorado Chapter, has created a one-of-a-kind Raising Our Sights Event. Wine for a Cure aims to spread awareness and fundraise on behalf of the Foundation Fighting Blindness with two signature wines from the Oregon Winery, Stoller Family Estates. The featured wines are a Chardonnay named “Variant” and a Pinot Noir named “Pigmentosa.”
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May 2, 2023
Atsena Receives FDA Authorization to Launch a Gene Therapy Clinical Trial for XLRS
Known as The Lighthouse Study, the Phase ½ trial is expected to begin in mid-2023
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May 2, 2023
Mental Health Awareness: Shattering the Stigma
Athletes around the world navigate the challenges of daily life and rigorous training, but what if a factor came into play that you had less control over? What if, one day, something changed in your vision?
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May 1, 2023
Eric Pierce Receives Proctor Medal for Outstanding Achievements in Retinal Research
During his Proctor Award Lecture, Dr. Pierce reviewed encouraging clinical trial results for Editas’ CRISPR/Cas9 treatment for people with LCA10