News

November 20, 2020November 20, 2020

Latest NORD Webinar Offers Insights on Starting Nonprofit, Patient Registry

News, syndicated

Leaders in the U.S. rare disease community came together recently for a webinar to present helpful information on how to start a nonprofit and patient registry. They shared about how ... Read more

November 20, 2020November 20, 2020

Plans Continue for Phase 2 Trial of Nasal Spray, OC-01, as NK Treatment

News

Plans to request that OC-01 (varenicline), Oyster Point Pharma‘s lead therapy candidate for a series of eye disorders, be cleared for testing in a Phase 2 trial in people with neurotrophic keratitis ... Read more

November 13, 2020November 13, 2020

Cacicol Helps Heal Persistent Corneal Damage in NK, Study Suggests

News

Cacicol eye drops safely and effectively healed persistent corneal damage in adults with neurotrophic keratitis (NK) who did not completely respond after two weeks of antibiotic therapy, results of a ... Read more

November 6, 2020November 6, 2020

NORD Hosting ‘RareLaunch’ Workshops to Help Start Rare Disease Non-profits

News, syndicated

The National Organization for Rare Disorders (NORD)’s RareLaunch training program will host two days of free virtual workshops in December, with the aim of empowering leaders to start non-profit organizations ... Read more

October 30, 2020October 30, 2020

Src Family Kinases May Be Therapeutic Target for NK, Preclinical Data Suggest

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Activating Src family kinases, a family of enzymes involved in cell migration and growth, enhanced corneal wound healing in cellular and animal models, a preclinical study has found. The findings ... Read more

October 26, 2020October 28, 2020

UK Organization ‘Same But Different’ Announces ‘Glimmer of Hope’ Photo Contest Winner

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A photo of a bespectacled young boy, his red baseball cap slightly askew as he enjoys time outside, will be featured on the front cover of an upcoming calendar in ... Read more

October 23, 2020October 22, 2020

Telehealth ‘Helpful’ Alternative to In-person Care, Rare Disease Patients Say

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A majority of rare disease patients using telehealth during the COVID-19 pandemic thought the experience positive, and many would like the option of continuing its use in future appointments, a series ... Read more

October 16, 2020October 16, 2020

NK May Be Early Symptom of Hereditary Sensory Autonomic Neuropathy Type 4

News

The neurological condition hereditary sensory autonomic neuropathy (HSAN) type 4 was diagnosed in a young child who first sought medical care due to symptoms of neurotrophic keratitis. The case was ... Read more

October 9, 2020October 9, 2020

Same But Different Asks Public to Vote on ‘Glimmer of Hope’ Calendar Photos

News, syndicated

Same But Different, a nonprofit U.K. group that uses art for social change, is inviting people to choose their favorite photographs in a calendar contest to heighten awareness of rare diseases, ... Read more

October 2, 2020October 2, 2020

New 3D Model Used to Examine Corneal Nerve Growth

News

A new 3D model of the cornea — the eye’s outer layer — is life-like enough that it could be helpful for a variety of research uses, including screening multiple ... Read more