Links to rare disease related-news releases and announcements at the National Institutes of Health, other Federal agencies, and outside the Federal government.

click on a year to expand the archive.

• 2008
  
  • January
    
    • NIH Scientists Detect Fatal Copper Disorder at Birth, January 8, 2008
  • February
    
    • FDA OOPD Announcement, February 8, 2008
    • HHT Foundation Award, February 8, 2008
    • Rare Disease Day, February 29, 2008
  • March
    
    • National Children's Study Announces Request for Proposals for New Study Centers, March 8, 2008
  • September
    
    • Focus on Rare Diseases, May 2008, September 23, 2008
    • Other Rare Disease Conferences, September 23, 2008
  • October
    
    • Scientists Identify Gene Variant Involved in Isolated Cleft Lip, October 5, 2008
    • The Tuberous Sclerosis Alliance announces the following Requests for Applications, October 29, 2008
• 2007
  
  • January
    
    • Second Gene Discovered for Recessive Form of Brittle Bone Disease, January 8, 2007
  • February
    
    • NCI Scientists Discover How T-Cell Leukemia Viruses Evade Body's Defense Mechanisms, February 5, 2007
    • Scientists Learn the Origin of Rogue B Cells, February 7, 2007
• 2006
  
  • January
    
    • NCI Issues Clinical Announcement for Preferred Method of Treatment for Advanced Ovarian Cancer, January 4, 2006
    • NHGRI Names Co-Chiefs of Inherited Disease Research Branch, January 10, 2006
    • Mice Studies Illustrate Potential of Chimp/Human Antibodies to Protect Against Smallpox, January 23, 2006
  • February
    
    • Coverage and Reimbursement of Genetic Tests and Services (February 2006), Report of the Department of Health and Human Services (DHHS) Secretary's Advisory Committee on Genetics, Health, and Society, February 1, 2006
    • Scientists Discover Genetic Profile of an Often-Misdiagnosed Chronic Allergic Disease of Children, February 1, 2006
    • NIH Announces Program to Foster the Independence of New Investigators, Office of Extramural Research (OER), February 1, 2006
    • Proceedings of NIH Conference on Improving End-of-Life-Care Published, February 2, 2006
    • The National Institutes of Health Will Announce A Major, New Public-Private Research Initiative, February 3, 2006
    • New Compound May Protect Against Liver Cancer, February 15, 2006
    • U.S. Surgeon General Urges Spanish-Speaking Americans to Know Their Family Health History, February 28, 2006
  • March
    
    • Study Finds Potential Marker To Identify Sickle Cell Patients at High Risk of Complications, March 6, 2006
    • Antibiotic Effective Against Leading Cause of Blindness Throughout the World, March 13, 2006
    • NHGRI Announces New Sequencing Targets, March 15, 2006
    • FDA and the Critical Path Institute Announce Predictive Safety Testing Consortium: Consortium Will Share Tests to Understand Safety of Potential New Drugs Earlier, March 16, 2006
    • NIH Provides $24 Million to Support Research Network, March 17, 2006
    • NIAID Updates "Focus on TB" Web Feature, March 21, 2006
    • Male Fat Distribution Pattern and Coronary Risk Profile Linked to X Chromosome Women Lacking Ovarian Function Shy, Anxious, March 21, 2006
    • NIH Director Selects Dr. Roger I. Glass as Fogarty International Center Director, March 31, 2006
  • April
    
    • Blind Mice Recover Visual Responses Using Protein from Green Algae, April 5, 2006
    • Novel Device Shows Great Potential in Detecting Oral Cancer, April 10, 2006
    • Researchers Discover New Disease-Causing Bacterium in Patients with Rare Immune Disorder, April 13, 2006
    • Steroids Do Not Prolong Survival in Intensive Care Patients with ARDS on Life Support, Finds NHLBI Study, April 19, 2006
    • Scientists Design Potent Anthrax Toxin Inhibitor, April 23, 2006
  • May
    
    • Researchers Find that Tumor Stem Cells are Good Models for Brain Tumor Research, May 5, 2006
    • NIH Launches Clinical Studies Nationwide to Investigate Rare Diseases, May 5, 2006
  • June
    
    • NIH Expands Initiative to Encourage Bench-to-Bedside Research, June 7, 2006
    • Gene Expression Profiling Can Accurately Diagnose Burkitt's Lymphoma, June 7, 2006
    • Lack of Key Enzyme Associated with Development of Rare Tumor, June 11, 2006
    • Neurons Grown from Embryonic Stem Cells Restore Function in Paralyzed Rats, June 20, 2006
    • Protein Tied to Usher Syndrome May Be Hearing’s ‘Missing Link’, June 27, 2006
  • July
    
    • NHLBI Scientists Find Blood Test Predicts Common and Severe Complication of Sickle Cell Disease, and Identifies Patients at Highest Risk of Death, July 18, 2006
  • August
    
    • Aplastic Anemia & MDS International Foundation (AA&MDSIF) Conference: On Bone Marrow Disease: Diagnostic and Treatment Issues for Hematology and Oncology Nurses, August 2-4, 2006, August 1, 2006
    • Arthritis Drug Helps Debilitating Inflammatory Disease, August 9, 2006
    • Researchers Discover a Unique Pattern of Gene Activity that Can Predict Liver Cancer Spread, August 14, 2006
    • NIH Seeks Input on Proposed Repository for Genetic Information, August 30, 2006
  • September
    
    • FDA Approval of First Totally Implanted Permanent Artificial Heart, September 5, 2006
    • NIH Senior Health Adds Information on Paget's Disease of Bone, September 8, 2006
    • Successful Public-Private Partnership Between NIAID and Sequella Yields Promising New TB Drug for Clinical Testing, September 12, 2006
    • National Institutes of Health to Map Genomic Changes of Lung, Brain, and Ovarian Cancers, September 13, 2006
  • October
    
    • NIH Announces Two Integral Components of The Cancer Genome Atlas Pilot Project, October 16, 2006
    • SIDS Infants Show Abnormalities In Brain Area Controlling Breathing, Heart Rate, October 31, 2006
  • November
    
    • NIAMS Funds New Centers of Research Translation, November 8, 2006
    • Inexpensive Test Detects H5N1 Infections Quickly and Accurately, November 14, 2006
    • National Institutes of Health Launches "Health Information Rx Program" on Newborn Screening and Related Genetic Disorders, November 20, 2006
  • December
    
    • NIH Announces Licensing Opportunities for Rare Disease Technologies, December 11, 2006
    • Gene Discovered for Form of Brittle Bone Disease, December 27, 2006
• 2005
  
  • January
    
    • NIH Action Plan Charts Future Challenges for Liver Disease Research, January 3, 2005
    • List of Cancer-Causing Agents Grows, January 31, 2005
  • February
    
    • New Way to Block Pox Shows Promise in Lab Study, February 1, 2005
    • NIH Calls on Scientists to Speed Public Release of Research Publications, February 3, 2005
    • The Shapes of Life: NIGMS Project Yields More Than 1,000 Protein Structures, February 10, 2005
    • Mothers' Exposure to Air Pollutants Linked to Chromosome Damage in Babies, February 15, 2005
    • Zinc Deficiency Linked to Increased Risk of Less-Common Form of Esophageal Cancer, February 15, 2005
    • Rapid, New Test Developed for Inherited Immune Deficiency, February 22, 2005
  • March
    
    • NCI Creates Gene Expression Database of Normal Human Organ Tissue, March 1, 2005
    • NHGRI Targets 12 More Organisms for Genome Sequencing, March 1, 2005
    • NCI Study Demonstrates That Cellular Defects in Premature Aging Disease are Reversible, March 6, 2005
    • NIAID Initiates Trial of Experimental Avian Flu Vaccine, March 23, 2005
  • April
    
    • Request for Public Comment by May 6, 2005 Draft Report on Coverage and Reimbursement of Genetic Tests and Services, Secretary's Advisory Committee on Genetics, Health, and Society, April 6, 2005
    • Scientists Discover How Ebola Virus Infects Cells, April 14, 2005
    • Test Could Improve Detection of Prion Disease in Humans, April 14, 2005
    • NHLBI Study: The Promise of New Medical Uses for Sodium Nitrite for Heart Attack and Organ Damage, April 14, 2005
    • Promising New West Nile Therapy Cures Disease in Mice, April 24, 2005
  • May
    
    • NIAID Awards First $27 Million Using New Bioshield Authorities, May 9, 2005
    • Mouse Gene Accounts For Blood Abnormalities As Well As Parkinson's Symptoms; Search Begins For Gene's Role in Human Illnesses, May 12, 2005
    • International Team Determines Geographic Origin of Leprosy, May 12, 2005
  • June
    
    • Variant Prion Protein Causes Infection But No Symptoms, June 2, 2005
    • Recommendations Accepted to Revamp NCI Clinical Trials System, June 7, 2005
    • Promising New TB Drug Enters Clinical Trial, June 14, 2005
    • NIAID Scientists Unveil Mechanism Behind Resistance to Severe Malaria, June 22, 2005
    • NIH Encourages African Americans to Discuss Kidney Disease at Family Reunions, June 23, 2005
    • Cancer Drug Slows Poxvirus in Mice, June 27, 2005
  • July
    
    • Scientists Discover How Nipah Virus Enters Cells, July 6, 2005
    • Scientists Uncover New Clues About Brain Function in Human Behavior, July 10, 2005
    • New Tuberous Sclerosis Complex Cognitive/Behavior Guidelines Published, TS Alliance News Release, July 11, 2005
    • Three Deadly Parasite Genomes Sequenced, July 14, 2005
    • Combination Therapy Leads to Partial Recovery from Spinal Cord Injury in Rats, July 26, 2005
  • August
    
    • Cognitive Therapy Reduces Repeat Suicide Attempts by 50 Percent, August 2, 2005
    • Researchers Model Avian Flu Outbreak, Impact of Interventions, August 3, 2005
    • Defective Gene Linked to Two Inherited Immune Deficiencies, August 4, 2005
    • NIGMS Funds New Stem Cell Centers, August 9, 2005
    • Gene Discovery Sheds Light on Causes of Rare Disease, Cancer, August 21, 2005
    • Anti-Cancer Drugs May Hold Promise for Premature Aging Disorder, August 29, 2005
    • Agreement Signed to Expand Vision Research Collaborations Between the United States and India, August 30, 2005
    • Study Reveals Genomics of Inflammation from Severe Injury, August 31, 2005
  • September
    
    • NIH Opens Up Medical Consultation Line to Patients Affected by Hurricane Katrina, September 14, 2005
    • Researchers Discover How Malaria Parasite Disperses From Red Blood Cells, September 19, 2005
    • NASH Clinical Research Network Launches Trial for Treatment of Liver Disease in Children, September 27, 2005
    • Scientists Show that Tick-Borne Flaviviruses Use a Novel Mechanism to Evade Host Defenses, September 28, 2005
    • NHLBI Funds New Centers for Cell-Based Therapy, September 29, 2005
    • NCI and 10 Other Institutions Launch Ovarian Cancer Clinical Trial, September 29, 2005
  • October
    
    • Large Tularemia Vaccine Contracts Among New NIAID Biodefense Awards, October 3, 2005
    • U.S. Kidney Failure Rates Stabilize, Ending a 20-Year Climb, October 11, 2005
    • Acellular Pertussis Vaccine Proves Effective in Adults, Adolescents, October 12, 2005
    • NHGRI's Large-Scale Sequencing Research Network Sets Its Sights on Disease Targets, October 17, 2005
    • Annual Bibliography of Significant Advances in Dietary Supplement Research 2004, October 24, 2005
  • November
    
    • Agricultural Workers at Increased Risk for Infection with Animal Flu Viruses, November 25, 2005
    • Launch of the 2006 NIH Directors Pioneer Award Program, November 28, 2005
  • December
    
    • Speedier NIH Review of Research Applications Planned, December 5, 2005
• 2004
  
  • January
    
    • NIH Office of Dietary Supplements Releases New Five-Year Strategic Plan (2004-2009), January 28, 2004
  • February
    
    • NHLBI Funds Clinical Centers in Pediatric Heart Disease, February 13, 2004
  • March
    
    • NIH Researchers Discover Promising New Therapy For Blinding Eye Disease, March 1, 2004
    • NCCAM to Host Strategic Planning Stakeholder Forum at NIH, March 8, 2004
  • May
    
    • Animal Studies Show Promise Treating Severe Chronic Pain, May 3, 2004
    • NIAID Rotavirus Vaccine Licensed for Commercialization, May 4, 2004
    • Researchers Discover Gene for Cornelia De Lange Syndrome, May 16, 2004
    • U.S., Irish Researchers Identify Important Clue to Genetic Basis for Neural Tube Defects, May 21, 2004
    • NIAID Announces Contracts to Develop Vaccine Against H5N1 Avian Influenza, May 27, 2004
  • August
    
    • Researchers Report New Gene Test for Isolated Cleft Lip and Palate, August 18, 2004
    • NHGRI Launches Centers For Excellence in Ethical, Legal and Social Implications Research to Pioneer Interdisciplinary Initiative, August 31, 2004
  • September
    
    • Rare Deficit (Williams Syndrome) Maps Thinking Circuitry, September 1, 2004
    • New Research Suggests Link Between Maternal Diet and Childhood Leukemia Risk, September 8, 2004
    • NIAID Forms Clinical Consortium to Improve Success of Organ Transplants, September 13, 2004
    • New Findings in the Fight Against Malaria, September 13, 2004
    • NIH Opens New Clinical Research Hospital, NIH News, September 21, 2004
    • Clinical Research Center Ribbon Cutting Ceremony, September 22, 2004
    • Studies Strengthen Kidney and Heart Disease Link, September 29, 2004
  • October
    
    • Artificial Neural Networks Can Predict Clinical Outcomes of Neuro Blastoma Patients, October 1, 2004
    • NIH Roadmap Accelerates, October 4, 2004
    • Scientists Begin Validation Study of Test to Detect Recurrence of Bladder Cancer, October 5, 2004
    • Study Using Robotic Microscope Shows How Mutant Huntington's Disease Protein Affects Neurons, October 13, 2004
    • NIH Director Provides One-Year Update on Strategy to Accelerate Medical Research, October 13, 2004
    • New Study on Smallpox in Monkeys Reveals Tactics of a Killer, October 13, 2004
    • Genetic Alliance BioBank Launched, Genetic Alliance BioBank Press Release, October 27, 2004
    • NIH Funds New General Clinical Research Center in Sacramento, October 28, 2004
  • November
    
    • U.S. Surgeon General's Family History Initiative, November 8, 2004
    • Research with Red Tide Toxin Yields Potential Therapies for Cystic Fibrosis, November 16, 2004
    • The NIH Funds Network to Study Drug-Induced Liver Injury (DILIN), November 19, 2004
    • NIH Awards $1 Million to UNC for Genome Fingerprint Scanning Program, November 30, 2004
  • December
    
    • NHLBI Stops Study Testing How Long Children with Sickle Cell Anemia Should have Blood Transfusions to Prevent Stroke, December 5, 2004
    • NIH Panel Issues State-of-the-Science Statement on End-of-Life Care, December 8, 2004
    • International HapMap Consortium Widens Data Access, December 10, 2004
    • First U.S. SARS Vaccine Trial Opens at NIH, December 13, 2004
• 2003
  
  • March
    
    • Rare Diseases Clinical Research Network, Request for Application (RFA RR-03-008), March 1, 2003
    • Rare Diseases Clinical Research Network Pre-Application Meeting Webcast, March 19, 2003
  • April
    
    • Updated Information for Potential Applicants to Request for Application (RFA RR-03-008), April 16, 2003
  • October
    
    • NIAID/NICHD Initiative Addresses Primary Immune Deficiency Diseases, October 3, 2003
  • November
    
    • NIH Establishes Rare Diseases Clinical Research Network, November 3, 2003
• 2002
  
  • November
    
    • Rare Diseases Act of 2002, November 1, 2002