PRESS

Pfizer's Viagra Faces FDA Review for Use in Children With Lung Condition

July 27, 2010

NIH Takes On New Role in Fight Against Rare Diseases

July 24, 2010

NORD Testifies Before Senate HELP Committee

July 21, 2010

A Great Win for Rare Diseases in U.S. Senate Appropriation Bill

July 15, 2010

Regulatory Flexibility

July 02, 2010

FDA Database Aims to Spark Orphan-Disease Drug Development

June 18, 2010

EXCLUSIVE: Pfizer plans to move fast on rare disease pacts

June 17, 2010

Good news for rare disease?

June 15, 2010

THE CHILDREN'S RARE DISEASE NETWORK LAUNCHES VALUABLE INFORMATIONAL BLOG

June 9, 2010

FDA Grants Orphan Drug Status For Cyclodextrin Compound To Treat Fatal Genetic Cholesterol Disease

May 17, 2010

Genetic Sequencing Kit Catches Rare Mutation for TARP Syndrome

May 15, 2010

Parents of child with rare illness aim to help

April 26, 2010

AltheaDx and The Nicholas Conor Institute for Pediatric Cancer Research Announce Molecular Diagnostics Collaboration to Improve the Diagnosis and Treatment of Childhood Cancer

April 19, 2010

Cooking with the Genzyme Recipe: New Players Funding Rare Disease Drugs in Boston

April 12, 2010

PhRMA Honors Patient Advocates Ron and Raychel Bartek

March 18, 2010

A Legacy For and Beyond Batten Disease

March 16, 2010

Study opens new avenue for developing treatments for genetic muscle-wasting disease

March 15, 2010

Novato's BioMarin finds niche and growing quickly

March 13, 2010

First whole genome sequencing of family of 4 reveals new genetic power

March 10, 2010

Push to Cure Rare Diseases

March 10, 2010

NIH-Funded Research Study

March 8, 2010

250 Million People Worldwide Estimated to Suffer From Rare Disease

March 8, 2010

GENE THERAPY REVERSES EFFECTS OF LETHAL CHILDHOOD MUSCLE DISORDER IN MICE

February 28, 2010

CHI SUPPORTS RESEARCH AND HOPE FOR PATIENTS OF RARE DISEASES

February 25, 2010

RARE DISEASE ADVOCATES UNITE TO TRANSLATE SLOGAN OF GLOBAL GENES PROJECT IN TIME FOR WORLD RARE DISEASE DAY!

February 25, 2010

reco® jeans SUPPORTS CHILDREN WITH RARE DISEASES

February 23, 2010

MILLIONS AROUND WORLD TO OBSERVE RARE DISEASE DAY ON SUNDAY

February 23, 2010

GLOBAL GENES PROJECT TO RAISE AWARENESS FOR MILLIONS OF CHILDREN LIVING WITH RARE DISEASE

February 1, 2010

GALAPAGOS TO FOCUS ON RARE DISEASES IN STRATEGIC SHIFT

January 26, 2010

THE PATIENT ASCENDANT

January 18, 2010

FUTURE OF NEWBORN SCREENING ENVISIONED: PROCEEDINGS NOW VIEWABLE ONLINE

January 7, 2010

HUNTING NEWBORN TESTS FOR SUPER-RARE GENE DISEASES

January 5, 2010

THE LONELINESS OF FIGHTING A RARE CANCER

January 5, 2010

DONATE GAMES CHARITY CONNECTS COMMUNITIES WORLDWIDE

December 21, 2009

DONATEGAMES TURNS USED VIDEO-GAMES INTO FUNDING FOR MEDICAL RESEARCH TO HELP KIDS

November 25, 2009

CHILDREN'S RARE DISEASE NETWORK RECEIVES LIFE TECHNOLOGIES FOUNDATION GRANT

November 17, 2009

BABY Z CURED OR RARE DISEASE IN 3 DAYS

November 11, 2009

SOCIAL NETWORKING SAVIORS: TWITTER, FACEBOOK USED IN EFFORT TO HELP SAVE A BABY'S LIFE

October 29, 2009

U.S. AND EUROPEAN RARE DISEASE ORGANIZATIONS SIGN STRATEGIC ALLIANCE

October 28, 2009

RARE DISEASE CENTER HOSTS SYMPOSIUM ON NEW STRATEGIES

October 27, 2009

RARE FIND

October 23, 2009

NEW FDA GROUPS FOR RARE, NEGLECTED DISEASES COULD SPEED PATH TO MARKET

October 12, 2009

ARNOLD NATIVE TO RUN ACROSS SAHARA DESERT

August 18, 2009

CAMP SUNDOWN SHINES IN THE BRONX

August 13, 2009

RESEARCHERS IDENTIFY NEW FUNCTION FOR PROTEIN MISSING IN DUCHENNE MUSCULAR DYSTROPHY

August 4, 2009

AMERICANS STRUGGLE TO PAY FOR HEALTHCARE: STUDY

June 22, 2009

DEAL REACHED TO CUT DRUG COSTS

June 20, 2009

ONE GIRL'S HOPE, A NATION'S DILEMMA

June 14, 2009

IN RARE DISEASE, A FAMILIAR PROTEIN DISRUPTS GENE FUNCTION

May 26, 2009

NEW INSTITUTE WILL STUDY RARE DISEASE

May 20, 2009

UNC-DUKE STUDY: IMPAIRED BRAIN PLASTICITY LINKED TO ANGELMAN SYNDROME LEARNING DEFICITS

May 10, 2009

TO MAKE PROGRESS IN RARE CANCERS, PATIENTS MUST LEAD THE WAY

May 9, 2009

MO. VOTES TO ADD 5 DISEASES TO NEWBORN SCREENINGS

May 9, 2009

SIGNATURE GENOMIC LABORATORIES DETECTS CHROMOSOME ABNORMALITIES IN INDIVIDUALS WITH PALLISTER-KILLIAN SYNDROME WITHOUT INVASIVE SKIN BIOPSY

May 7, 2009

MIRACLE FOR MATTHEW

May 5, 2009

SHRINKING BABY MAGGIE AGNEW BAFFLES DOCTORS

May 4, 2009

DEAL REACHED TO CUT DRUG COSTS

June 20, 2009

WASHINGTON (Reuters) - Drug manufacturers will offer some $80 billion in prescription discounts for Medicare recipients under a deal unveiled on Saturday, which could boost President Barack Obama as he pushes to overhaul the $2.5 trillion U.S. healthcare system.

"The agreement reached today to lower prescription drug costs for seniors will be an important part of the legislation I expect to sign into law in October," Obama said in formally announcing the pact.

The companies have agreed to provide for the next decade a 50 percent discount for those elderly and disabled Americans in the Medicare health insurance program who face a gap in coverage after their drug costs reach a certain level, known as the "doughnut hole".

"The existence of this gap in coverage has been a continuing injustice that has placed a great burden on many seniors," Obama said in a statement. Medicare coverage does not apply to payments between $2,700 and $6,154.

The deal was negotiated between the Pharmaceutical Research and Manufacturers of America industry association and Senate Finance Committee Chairman Max Baucus who is leading one of many congressional panels drafting healthcare legislation.

"This commitment to support legislation that will help close the coverage gap reflects our ongoing work with Congress and the Administration to make comprehensive health care reform a reality this year," the industry group said in a statement.

UNINSURED AMERICANS

Costs for healthcare have soared faster than the inflation rate and the Democratic president has pledged to work to curb those costs as well as find a way to provide coverage to the 46 million uninsured Americans.

Americans strongly support fundamental changes to the healthcare system and a move to create a government-run insurance plan to compete with private insurers, according to a New York Times/CBS News poll published on Saturday.

The White House has said some $950 billion in cuts have been found to cover its reform efforts but there are reports that the costs could reach as much as $1.6 trillion and still not cover everyone, setting off a fierce debate on how to close the gap.

That has given Republicans an opening to attack, particularly since Americans are growing worried about the eye-popping record budget deficits facing the country -- more than $1.8 trillion in fiscal 2009 alone.

Democrats in the U.S. House of Representatives proposed a draft of their healthcare bill on Friday that calls for all citizens to be able to get insurance regardless of medical history and that coverage should be mandatory for individuals and businesses.

They would create a new government plan to help cover the uninsured -- a move backed by Obama but resisted by Republicans and some centrist Democrats who fear it will overwhelm private insurers and require vast amounts of public funding.

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