Updates

March 5, 2021March 5, 2021
Low-cost, Topical Insulin Drops Show Promise for Hard-to-treat NK

Topical insulin drops show promise in successfully treating refractory, or difficult-to-treat, neurotrophic keratitis (NK), according to a recent study. Although more studies are needed to ... Read more
February 26, 2021February 26, 2021
Corneal Neurotization Surgery Doesn’t Guarantee Full Vision

Despite being successful, corneal neurotization — a surgical procedure that seeks to restore nerve function in the cornea — does not guarantee neurotrophic keratitis (NK) ... Read more
February 25, 2021February 25, 2021
Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion

Diagnosed with sickle cell disease as a 6-month-old, Tristan Lee has faced a lot of challenges over his 37 years of life. But from a ... Read more
February 22, 2021February 22, 2021
Rare Disease Day at NIH, Set for March 1, Growing Year by Year

Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient stories, research ... Read more
February 19, 2021February 19, 2021
Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients

People with rare disorders have a worse healthcare experience than those affected by chronic diseases, according to the results of an international survey conducted by ... Read more

News

Study Ties Reactivated Herpes Virus to Vision Loss
February 19, 2021February 19, 2021
Herpes zoster ophthalmicus (HZO), which is a common cause of neurotrophic keratitis (NK), was associated ...
News, syndicated

Pandemic Won’t Stop Rare Disease Day on Feb. 28
February 11, 2021February 11, 2021
Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 ...
News

Rare Autoimmune Disorder Leads to NK, Case Study Reports
February 5, 2021February 5, 2021
A case study described how a woman with a rare genetic autoimmune disorder developed severe ...
News, syndicated

NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns
February 2, 2021February 2, 2021
While progress was made last year on newborn screening and other policy issues critical to ...
News, syndicated

COVID-19 Vaccines Pose Little Risk to Rare Disease Patients, FDA, CDC Say
January 27, 2021January 27, 2021
The two COVID-19 vaccines that recently received emergency approval from the U.S. and other worldwide ...
News

Complicated Case of NK Managed With Oxervate
January 22, 2021January 22, 2021
A complicated case of neurotrophic keratitis (NK) on a corneal graft was successfully treated with ...

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NORD’s Caregiver Respite Program Continues Through Pandemic
January 22, 2021January 22, 2021
Caring for a loved one with a rare disease, especially during these uncertain times, demands ...
Oxervate Effective at Managing Hard-to-treat NK, Case Study Reports
January 15, 2021January 15, 2021
Adding Oxervate (cenegermin) eye drops to conventional treatment approaches may successfully manage hard-to-treat neurotrophic keratitis ...
Oxervate Found to Help Wound Healing, Improve Vision in Early Stage NK
January 8, 2021January 8, 2021
NORD Seeks Speakers for 2021 Virtual ‘Living Rare, Living Stronger’ Forum
January 8, 2021January 8, 2021
Bandage Contact Lens May Lead to Severe Infection in Meretoja’s Syndrome and NK
December 18, 2020December 18, 2020
Oyster Point Submits Phase 2 Protocol to FDA to Test OC-01 Nasal Spray for NK
December 11, 2020December 11, 2020

Oxervate Effectively Treated Boy With NK Caused by Rare Disorder, Case Study Reports
December 4, 2020December 4, 2020
A young boy with neurotrophic keratopathy (NK) caused by a rare congenital disorder was successfully ...
NORD Push for Rare Disease Advisory Councils Focus of Dec. 16 Public Meeting
December 4, 2020December 4, 2020
Survey Finds COVID-19 Disrupted Care, Well-Being of Rare Disease Patients in Europe
November 26, 2020November 26, 2020
Latest NORD Webinar Offers Insights on Starting Nonprofit, Patient Registry
November 20, 2020November 20, 2020

Plans Continue for Phase 2 Trial of Nasal Spray, OC-01, as NK Treatment
November 20, 2020November 20, 2020
Plans to request that OC-01 (varenicline), Oyster Point Pharma‘s lead therapy candidate for a series of eye ...
Cacicol Helps Heal Persistent Corneal Damage in NK, Study Suggests
November 13, 2020November 13, 2020
NORD Hosting ‘RareLaunch’ Workshops to Help Start Rare Disease Non-profits
November 6, 2020November 6, 2020

News

Src Family Kinases May Be Therapeutic Target for NK, Preclinical Data Suggest
October 30, 2020October 30, 2020
Activating Src family kinases, a family of enzymes involved in cell migration and growth, enhanced ...
News, syndicated

UK Organization ‘Same But Different’ Announces ‘Glimmer of Hope’ Photo Contest Winner
October 26, 2020October 28, 2020
A photo of a bespectacled young boy, his red baseball cap slightly askew as he ...
News, syndicated

Telehealth ‘Helpful’ Alternative to In-person Care, Rare Disease Patients Say
October 23, 2020October 22, 2020
A majority of rare disease patients using telehealth during the COVID-19 pandemic thought the experience positive, ...
News

NK May Be Early Symptom of Hereditary Sensory Autonomic Neuropathy Type 4
October 16, 2020October 16, 2020
The neurological condition hereditary sensory autonomic neuropathy (HSAN) type 4 was diagnosed in a young ...
News, syndicated

Same But Different Asks Public to Vote on ‘Glimmer of Hope’ Calendar Photos
October 9, 2020October 9, 2020
Same But Different, a nonprofit U.K. group that uses art for social change, is inviting ...
News

New 3D Model Used to Examine Corneal Nerve Growth
October 2, 2020October 2, 2020
A new 3D model of the cornea — the eye’s outer layer — is life-like ...
News

New Stem Cell Procedure to Replace Damaged Corneas Found Safe and Feasible
September 25, 2020September 25, 2020
Surgeons at Harvard Medical School have found that a technique used to replace the surface ...
News

Oxervate Leads to Long-term Restoration of Corneal Sensitivity in 3 NK Patients
September 18, 2020September 18, 2020
Oxervate (cenegermin) eye drops healed corneal lesions and increased corneal sensitivity over the long term ...
News

Case Report Supports Effectiveness of PROSE Lens for NK
September 11, 2020September 11, 2020
A specialized type of lens called a PROSE (prosthetic replacement of the ocular surface ecosystem) ...