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

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

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

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

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

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

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

European Initiative Targets Diagnosis, Treatment of Rare Diseases

Targeting Complement C5 Protein Effectively Alleviates aHUS Symptoms, Study Suggests

Macedonian Gaucher Activist Publicizes Plight of Rare Disease Patients

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

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

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

NORD Honors Industry, Patient Advocates at Rare Impact Awards Gala

Eurordis Unveils Integrated-care Initiative for Rare Disease Patients

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

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

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

aHUS May be Associated With Heart Disease, Case Report Shows

Agency Unveils RaDaR to Help Patient Groups Develop Rare Disease Registries

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

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

Study Identifies Rare Genetic Variants Linked with Anti-FHs aHUS

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

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

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

First Biosimilar of Soliris Approved for Use in Russia

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

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

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

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

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

Moral Dilemmas Complicate Treatment of Rare Diseases, Says Israeli Bioethicist

NIH Rare Disease Day Highlights Joint Networks Advancing Array of Research

Potential aHUS Therapy OMS721 Receives Generic Name Narsoplimab

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

Vienna to Host RARE2019 Meeting on Rare Diseases

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

Scientists Create New Mouse Model for Atypical Hemolytic Uremic Syndrome

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

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

Quarterly Soliris Treatment Prevented aHUS Relapse, Case Report Says

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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