News Co-occurrence of aHUS, TMA, and Alport Syndrome Suggest Shared Mechanism, Case Report Says

News In XLAS, COL4A5 Mutations Determine Progression of Hearing Loss, Study Finds

News Genetic Testing More Reliable than Hematuria to Determine Alport’s Mode of Inheritance, Case Reports Show

News Rising Healthcare Costs Strain EU Budgets Even as New Therapies Flourish

News Urinary Levels of CD80 Protein Not Suitable to Distinguish Between Types of Kidney Disease, Study Suggests

News DNA Sequencing Technique Finds COL4A5 Mutations in 2 Alport Patients With No Relevant Family History

Alport syndrome news, News Newly Identified DDR1 I Inhibitor Can Prevent Kidney Fibrosis, Loss of Function in Alport Syndrome Mice

News Patients in Japan Also Show Good Long-term Survival After Kidney Transplant and No Sign of Alport’s Return, Study Finds

News Careful Donor Evaluation Can Improve Alport Patients’ Kidney Transplant Outcomes

News Sanofi Acquires Global Rights to RG-012, Investigational Alport Syndrome Therapy

News Alport Syndrome Patients Show Progressively Lower Quality of Life Over Time, Study Reports

News #NORDSummit – Major Issues on Table for Rare Disease Patients in US as Midterm Elections Approach

News Variant’s Experimental Therapy HPβCD May Halt Kidney Damage in Alport Syndrome, Mouse Study Shows

News Reata to Present Promising Results on Bardoxolone Methyl in Treating Alport, Other Kidney Diseases

News New Mutation in the COL4A5 Gene of X-linked Alport Syndrome Found, Case Study Reports

News Advocacy Groups, Doctors Question Rising Prices of Rare Disease Treatments

News COL4A5 and LAMA5 Mutations May Explain Range of Symptoms in Family with Hereditary Hematuric Disease, Study Shows

News Bardoxolone Shows Potential to Treat Rare Forms of CKD in PHOENIX Trial

News Study Helps Understand Hearing Loss in Patient with X-linked Alport Syndrome

News #NORDSummit – More Than 700 Expected to Attend Oct. 15-16 Rare Disease Summit in Washington

News Alport Syndrome Screening in Adults May Be Critical to Enhance Care of Their Offspring, Study Suggests

News American Kidney Fund Website Now Includes Information on Alport, Other Rare Kidney Diseases

News More Studies Urged to Classify Gene Mutations Before Diagnosing Alport Syndrome

News Patients’ Stem Cells a Potential New Cell Model for Alport Research, Study Suggests

News Alport Syndrome and Its Challenges Focus of Early August Meeting with FDA

News Recognition of Inheritance Patterns in XLAS Critical for Proper Diagnosis, Care, Case Report Shows

News Phase 2 Trial Data Show Bardoxolone’s Potential to Reverse Kidney Damage in Alport Syndrome

News Anonymous $10K Grant Will Provide Surrogacy for Alport Syndrome Patient

News Urinary EGF Levels Could Help Predict Alport Syndrome Progression in Children, Study Suggests

News Regulus Pauses Clinical Program of RG-012 as Treatment for Alport Syndrome

News COL4A5 Gene Abnormalities May Help Predict Renal Prognosis of XLAS Patients, Study Suggests

News Small Molecule Seen to Slow Alport’s Progression in Mouse Model of Disease

News EU Grants Bardoxolone Orphan Drug Status as Potential Alport Therapy, Phase 3 Trial Enrolling

News Rare Eye Symptoms of Alport Syndrome Linked to COL4A4 Mutation in Portuguese Woman

News US ‘Right to Try’ Law Meets with Mix of Praise and Criticism, Including Among Those with Rare Diseases

News Proposed Large Gene Panel Analysis Helps Diagnose Alport, Other Inherited Kidney Diseases, Study Shows

News #ERDC2018 – When Treating Rare Disease Patients, Don’t Overlook Quality of Life, Panel Urges

News Recurrence of Kidney Inflammation a Risk Factor for Kidney Rejection After Transplant, Study Shows

News ‘Rare Impact Awards’ Dinner Marks Orphan Drug Act and NORD at 35

News #ECRD2018 – EU Must Do More for Rare Disease Patients, Eurordis Leaders Say

News Severe Alport Mutations Do Not Affect Kidney Transplant Outcomes, Study Shows

News Article Questioning Safety of Phase 3 Bardoxolone Trial ‘Inaccurate,’ Reata CMO Says

News #ECRD2018 – Patient Access and Collaboration Focus of Eurordis Meeting May 10-12

News Experts Raise Concerns Over Bardoxolone’s Long-term Safety in Alport Patients

News Variations Between Alport, Pierson Syndromes Explain Kidney Damage Differences

News Bardoxolone Methyl Continues to Aid Alport Patients with Kidney Disease, New Data Shows

News NIH Agency Pioneers Collaborative Research into Rare Diseases

News Researchers Find Potential Therapeutic Target for Alport Syndrome in Mouse Study

News New System Proposed for Classifying Collagen IV Gene Disorders as Types of Alport

News Genome Sequencing and Its Clinical Potential Focus of NYC Rare Disease Day Event

News Screening Test Raises Possibility of Therapeutic Approach for Alport Syndrome

News Alport Syndrome Case Study Shows Unusual Transition in Boy’s Kidney

News ‘A Disease May Be Rare, Hope Should Never Be,’ Says Boy with SMARD at Connecticut Rare Disease Day Event

News Tailored Chemo Doses Proved Successful for Alport Patient with Breast Cancer in Case Report

News Rare Disease Groups Welcome FDA’s Embrace of ‘Real World’ Data in Clinical Trials

News Scientists Develop Better Way to Assess Alport-related Molecule’s Formation

News US Lawmakers Urge Bipartisan Support for Rare Disease Research, Patients’ Needs

News Alport Syndrome Is Potential Risk Factor for Pregnancy-Related Complications, Study Finds

News Increased Protein Levels Linked to Pregnancy Complications in Alport Syndrome, Study Shows

News Reata Expects Key Trial Results on Kidney Disease Therapy Bardoxolone in Third Quarter

News Retrophin, Horizon Donate $3M Each to Rare Disease Institute at Children’s National

News BioNews to Cover 3 Rare Disease Day Events, Including NIH Conference

News Rare Case of Alport Patient with Pancreatic Tumors Needing Kidney Transplant Detailed

News Patient Advocacy Groups Worldwide Plan Events to Mark Rare Disease Day, Feb. 28

News Similar Genetic Mutations Could Show that Kidney Disease Types Are Actually Stages of Progression, Study Says

News Researchers Study Rare Case of a Foodpipe Abnormality in Boy with Alport Syndrome

News Rare Disease Groups, Patients Differ on ‘Right to Try’ Bill Before US Congress

News NORD Fundraiser Sets 7,000-Mile ‘Bike, Run or Walk’ Goal for 7,000 Rare Diseases

News Rupture of Eye’s Lens Capsule Is Rare and Avoidable Risk in Alport, Case Report Argues

News Successful Kidney Transplant Can Reverse Platelet Dysfunction in End-stage Renal Disease, Study Shows

News New Look at Old Data Supports Bardoxolone Methyl as Kidney Disease Treatment, Reata Reports

News Alport Disease Severity May Be Influenced by Additional, Non-Collagen Gene Mutations

News Alport Syndrome Foundation and Partners Call for Research Proposals

News Women Also May Develop a Severe Form of X-Linked Alport Syndrome, Study Finds

News Top 10 Alport Syndrome Articles of 2017

News Cataract Laser Surgery Improves Sight of Alport Patient with Lens Abnormality

News Vanderbilt Professor Earns Prize for Work on Alport-Linked Collagen 4

News RNA Blockers Are Promising Alport Syndrome Therapy, Review Reports

News Case Report: Tissue Biopsy Essential to Diagnose Complex Cases of Kidney Disease

News Stem Cells Can Slow Alport by Reining in Blood Vessel Growth Signaling, Study Shows

News Thickness of Eye’s Retina May Aid in Diagnosing Men with More Advanced X-linked Alport Syndrome, Study Says

News Australians Find Compound That Prevents the Protein Misfolding Seen in Alport Syndrome

News Australians Identify Protein That Could Mark Alport Syndrome’s Progression

News COL4A5 Protein Measurements in Alport Patients’ Kidneys May Aid in Prognosis, Researchers Say

News Rare Disease Patient Groups Unite to Preserve Orphan Drug Tax Credit in US

News Reata’s Bardoxolone Methyl Benefits Patients with Chronic Kidney Disease, TSUBAKI Trial Shows

News Alport Syndrome Foundation Seeks Therapies for Hearing as Well as Kidney Loss

News Rare Disease Clinical Trials Need Patient-Centered Outcome Measures, European Researchers Argue

News Kidney Cells in Urine May Be a New Tool to Diagnose and Treat Alport, Researchers Say

News CARDINAL Study Shows Bardoxolone Methyl Improves Kidney Function

News New COL4A3 Gene Mutation Linked to Alport Syndrome Identified in Spanish Family

News Children’s National, NORD Partner to Create Rare Disease ‘Centers of Excellence’

News Travel Stipends Available to Attend Rare Disease Week on Capitol Hill in 2018

News #NORDsummit – Alternatives to Large Placebo Trials, Grant Awards Among Ways FDA Supporting Rare Diseases, Chief Says

News Researchers Report Rare Case of Alport Syndrome with Lens Abnormalities Prior to Renal Symptoms

News #NORDsummit – Despite Criticism, Orphan Drug Act Is Working to Advance Needed Treatments, FDA Says

News Japanese Team Identifies Factor That Worsens Alport Syndrome in Mice

News Rare Diseases Institute Launches at UMass with $10 Million Gift

News #NORDSummit – Alport Syndrome on Agenda at NORD’s Oct. 16-17 Rare Disease Summit

Alport syndrome news, News Alport Syndrome Case Study to Be Presented at AAO Annual Meeting