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

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

News NY Kidney Recipient Becomes Spokesman for Alport Syndrome Foundation

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

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

News Rare Disease Film Festival Highlights Patient and Researcher Unity

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

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

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

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

News Reata Reacquires Rights for Bardoxolone, Other Nrf2 Activators, After Terminating Partnership with AbbVie

News COL4A5 Mutation Tied to XLAS Does Not Cause Disease, Study Suggests

News Eye Abnormalities Detectable in Exam May Help to Diagnose Alport Syndrome, Study Says

News NORD 2019 Rare Disease Summit Set for Oct. 21-22 in Washington, DC

News Alport Patient Shows Improvement After Receiving Kidney from Father Later Found to have ADAS, Study Says

News Pregnancy May Exacerbate Symptoms of Recessive Form of Alport Syndrome, Case Report Shows

News ‘Disorder’ Film Festival Offers Look at Siblings Touched by Rare Diseases

News At NY Genome Center, Legal Expert Presents Ethical Dilemmas in Gene Editing

News New Kidney Cell Model May Be Useful For Understanding Diseases Such as Alport Syndrome, Study Shows

News Nebraska’s Neena Nizar Seeks Cure for Jansen’s, One of World’s Rarest Diseases

News 2nd Hypertension Treatment Seen to Ease Kidney Fibrosis in Mice, Possibly via Signaling Molecule

News Next-generation Sequencing Better for Genetic Testing of AS, Study Finds

News Rare Disease Groups Seek Public Support to Renew Newborn Screening Act in Senate

News Oklahoma Ranks Lowest on Programs Key to Rare Diseases on NORD’s 2019 State Report Card

News X-linked Alport Syndrome Explains Blood in Urine of Man with Rheumatoid Arthritis, Study Reports

News Rare Genetic Mutation Leads to Severe X-linked Alport Syndrome in 10-year-old Boy, Case Study Finds

News European Initiative Targets Diagnosis, Treatment of Rare Diseases

News Review Provides Insight into Alport Patient and Research Communities

News Macedonian Gaucher Activist Publicizes Plight of Rare Disease Patients

News New COL4A5 Mutation Linked to X-linked Alport in Chinese Family

News World’s First Alport Stamp Is Macedonian Mom’s Latest Win for Rare Disease Patients

News Sulfatides May Play Important Role in Early Stages of Alport Syndrome, Mouse Study Says

News NORD Honors Industry, Patient Advocates at Rare Impact Awards Gala

News Ongoing Research Testing Several New Therapies for Alport Syndrome

News Eurordis Unveils Integrated-care Initiative for Rare Disease Patients

News ‘Rare Barometer’ Program Helps Eurordis Shape EU Rare Disease Policy

News New Mutations, Possible Links to Alport Syndrome Progression Found in Chinese Families, Study Shows

News Alport Diagnosed in Woman with Chronic Kidney Disease, Case Report Shows

News Agency Unveils RaDaR to Help Patient Groups Develop Rare Disease Registries

News Certain Patients with Alport Syndrome at Risk for Hypertensive Disease, Study Finds

News Rare Diseases Constitute a ‘Public Health Issue,’ NCATS Director Warns

News Patient Enrollment Completed for CARDINAL Study Testing Bardoxolone for Improving Kidney Function

News Young Patients with Alport Syndrome at Higher Risk for Kidney Infections with BK Virus after Transplant, Study Finds

News XLAS Patients with ARAS Mutations are Rare, but They may Experience Worse Symptoms, Small Study Shows

News Eye Exams Looking at Lens Diameter and Power May Help in Diagnosing Alport, Study Says

News miR-21 May Be Therapeutic Target For Kidney Disease In Alport Syndrome

News Mutations in Non-collagen Genes Can Worsen Alport-related Kidney Problems, Study Suggests

News Advocates from Kidney Organizations Gather for Summit in D.C.

News Brexit Could Have Real Effects for UK Rare Disease Patients, Experts Warn

News Moral Dilemmas Complicate Treatment of Rare Diseases, Says Israeli Bioethicist

News NIH Rare Disease Day Highlights Joint Networks Advancing Array of Research

News Children with Alport Show Macular Thinning and Other Eye Changes, Study Reports

News WODC 2019 Organizers Expect 1,200 to Attend Rare Disease Conference in April

News Gene Therapy Aiming to Restore COL4 Protein Not Likely to Succeed, Study in Mice Reports

News Vienna to Host RARE2019 Meeting on Rare Diseases

News Report Identifies New COL4A4 Variant, Highlights Next Generation Sequencing

News Patients, Family and Friends to Take Part in Variety of Rare Disease Day Events Worldwide

News ICD-10 Codes, ‘Really Important’ to Rare Disease Patients, Soon Up for Fresh Consideration

News New Mice Model Mimics Features of Human XLAS

News FDA Revising ‘Draft Guidance’ on Developing Treatments for Rare Diseases

News Potential Alport Biomarkers, Treatment Targets Identified in Stem Cell Analysis

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