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December 9, 2019December 9, 2019

Reata and Invitae Partner to Offer Genetic Testing and Counseling for Chronic Kidney Disease

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To promote the diagnosis of chronic kidney disease (CKD), genetic information company Invitae and Reata Pharmaceuticals are collaborating to offer free testing and counseling support. Alport syndrome accounts for ... Read more

December 5, 2019December 5, 2019

HHS Secretary Alex Azar Touts White House Efforts to Cure Rare Diseases

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Despite skyrocketing healthcare costs, President Trump is committed to protecting the 30 million or so Americans with rare diseases and ensuring timely, affordable access to lifesaving treatments, the nation’s ... Read more

December 2, 2019December 2, 2019

NY Kidney Recipient Becomes Spokesman for Alport Syndrome Foundation

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Until he was diagnosed at age 26, Kevin Schnurr had no idea what Alport syndrome was. And even though the worst is now behind him — thanks to a ... Read more

November 25, 2019November 25, 2019

Sangamo to Launch First-in-human Clinical Trial Testing TX200 Cell Therapy in End-stage Renal Disease

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The United Kingdom’s Medicines Healthcare Products Regulatory Agency (MHRA) has authorized the first-in-human clinical trial testing Sangamo Therapeutics’ TX200, a cell-based CAR-Treg therapy, in preventing rejection of transplanted kidneys in ... Read more

November 18, 2019November 18, 2019

New COL4A4 Mutation Discovered in Young Boy With Alport Syndrome, Case Report Shows

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Researchers have discovered a new mutation in the COL4A4 gene that leads to the development of Alport syndrome, according to a recent case report. The case report, titled “Autosomal ... Read more

November 13, 2019

Rare Disease Film Festival Highlights Patient and Researcher Unity

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Rare disease-themed videos glowed on a large screen before an audience of people in wheelchairs, with crutches, and bearing oxygen tanks this Nov. 9 and 10 in San Francisco. ... Read more

November 13, 2019November 13, 2019

Bardoxolone May Improve Kidney Function in Alport Patients, Phase 3 Results Suggest

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Reata Pharmaceuticals’ investigational therapy bardoxolone methyl may effectively improve and preserve renal function in patients with chronic kidney disease caused by Alport syndrome, topline results from a Phase 3 ... Read more

November 11, 2019November 12, 2019

Investigational Cell Therapy FCR001 Shows Promise for Preventing Post-transplant Kidney Failure

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Results from a Phase 2 clinical trial support the potential of Talaris Therapeutics’ investigational cell therapy FCR001 to prevent recurrence of kidney failure in patients who have undergone a ... Read more

November 4, 2019November 4, 2019

Eye Deformity Common in Alport Best Captured Using Optical Coherence Tomography, Case Report Finds

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A common eye abnormality of Alport syndrome (AS), called anterior lenticonus, can best be diagnosed by a non-invasive method called anterior segment optical coherence tomography (AS-OCT), a case study reports. Researchers used ... Read more

October 28, 2019October 28, 2019

Alport Patients Should be Checked for Eye Condition Keratoconus, Case Study Suggests

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The eye condition keratoconus — when the cornea thins out and bulges like a cone — can occur in people with Alport syndrome, according to a new case report. ... Read more

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