News Experts Propose New Diagnostic Criteria to Distinguish TMA Associated With aHUS

News Soliris Treatment Personalized to Reduce aHUS Patients’ Burden and Medical Costs, Case Study Reveals

News Difficulties in Diagnosing aHUS When Family History Lacking Detailed in Case Report

News Pregnancy-associated aHUS Occurs Post-Partum, After Pregnancy Complication, and Is Successfully Treated with Soliris, Study Suggests

News Alexion Adds More Complement System Targets to Dicerna’s RNAi-based Therapy Collaboration

News Preventive Plasma Therapy Reduces Risk of Kidney Transplant Failure, Austrian Study Shows

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

News Study Links ADAMTS13 Activity to Improved PEX Treatment Outcomes in aHUS Patients

News New, Modified Blood Test May Help Identify Complement Dysregulation in aHUS, Other TMAs, Study Suggests

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

News Rare Disease Film Festival Highlights Patient and Researcher Unity

News Severe Hypertension Common in aHUS Patients and Soliris Effective at Treating Them, Study Finds

News Rare Eye Manifestations Linked to aHUS, Study Reports

News FDA Approves Alexion’s Ultomiris for Treating aHUS in Children and Adults

News Clinical Deterioration Should Not Dictate Soliris Withdrawal, Report Suggests

News Soliris Treatment Resolved aHUS in 2 Patients with Inflammatory Bowel Disease, Study Reports

News Soliris Treatment for aHUS May Not Increase Risk for Miscarriages, Small Study Suggests

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

News aHUS Linked to Similar Disorder via Complement System and Protein Deficiency, Study Says

News Treatment with Soliris May Help aHUS Patients Who Undergo Kidney Transplant, Study Suggests

News aHUS Alliance Gearing Up for Sept. 24 aHUS Awareness Day

News Soliris Treatment is Safe in aHUS Patients, Registry Study Reports

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

News Soliris Withdrawal After Full Recovery in aHUS Patients Is Safe, Study Indicates

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

News Multidisciplinary Approach Needed to Evaluate Patients Suspected of Having aHUS, Case Report Says

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

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

News Bloody Stools Link aHUS and Inflammatory Bowel Disease in 3 Boys Detailed in Case Study

News Study Reports Outcomes of aHUS Patients with Anti-Factor H Antibody

News European Initiative Targets Diagnosis, Treatment of Rare Diseases

News Targeting Complement C5 Protein Effectively Alleviates aHUS Symptoms, Study Suggests

News Macedonian Gaucher Activist Publicizes Plight of Rare Disease Patients

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

News Soliris Treatment May Trigger Antibody Accumulations in Kidneys, Case Report Suggests

News FDA Grants Priority Review to sBLA of Ultomiris for Treatment of aHUS

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

News Eurordis Unveils Integrated-care Initiative for Rare Disease Patients

News Plasma Exchange Safe and Effective in Children with aHUS, Study Reports

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

News Novel Mutation in CFH Gene Linked to aHUS in German Woman, Case Study Shows

News aHUS May be Associated With Heart Disease, Case Report Shows

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

News Rapid Drug Desensitization Allowed Child With aHUS to Continue Soliris Treatment, Case Report Says

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

News Study Identifies Rare Genetic Variants Linked with Anti-FHs aHUS

News PALS Uplifts the Spirits of Rare-Disease Patients by Offering Free Flights

News Soliris Improves, Stabilizes Kidney Function Up to 6 Years, aHUS Observational Study Shows

News Soliris Helps to Protect Kidney Transplants in aHUS Patients – Provided Disease Diagnosed, Study Reports

News First Biosimilar of Soliris Approved for Use in Russia

News Hypertensive Emergency, Complement Mutations Key to aHUS Prognosis, Study Says

News Novel Blood Test May Improve Monitoring of aHUS Activity and Relapse, Study Shows

News Increasing Activity of Complement Factor H May Ease Symptoms in aHUS Patients

News Toddler with aHUS-induced Seizures Highlights Importance of Early Intervention, Case Study Says

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 Potential aHUS Therapy OMS721 Receives Generic Name Narsoplimab

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

News Vienna to Host RARE2019 Meeting on Rare Diseases

News More Research Needed into Optimal Duration of Soliris Treatment for aHUS Patients, Expert Says

News Scientists Create New Mouse Model for Atypical Hemolytic Uremic Syndrome

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

News Genetic Test Finds aHUS in Pregnant Woman Hospitalized with Variety of Ills

News Quarterly Soliris Treatment Prevented aHUS Relapse, Case Report Says

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

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

News Lab Tests Help to Monitor Effectiveness of Long-term Soliris Use in Patients, Case Study Reports

News Ultomiris Normalizes Blood Markers, Improves Kidney Function in aHUS Patients, Phase 3 Trial Shows

News Soliris Can Effectively Treat aHUS with Atypical Neurological Symptoms, Report Says

News Baby Diagnosed with aHUS After Ruling Out HUS Caused by Bacterial Infection

News Report Describes Patient with aHUS, Alport, Subset of Kidney Inflammation

News Extra-renal Manifestations Occur Most Frequently in CNS of Children with aHUS, Study Reports

News Omeros, Cambridge Establish New Research Center Dedicated to Complement and Inflammation Disorders

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

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

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

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

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

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

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