You can help show the impact of rare diseases across the U.S. by submitting your photo and story to the Handprints Across America® Gallery. Now in its seventh year, Handprints Across America shows people observing Rare Disease Day all across the nation in a variety of settings.
Danbury, Conn. — The National Organization for Rare Disorders (NORD)®, the leading nonprofit organization dedicated to helping the 30 million Americans with rare diseases, today announced its new 7,000 Mile Rare Movement, challenging Americans to pledge dollars to walk, run or bike 7,000 miles collectively throughout the month of February. The 7,000 miles represent the 7,000 known rare diseases, most of which are life-altering and do not yet have a treatment or cure.
On 11/5/2017, the Everylife Foundation for Rare Diseases, Rare Disease Legislative Advocates (RDLA) – 2017 Rare Voice (“Abby Meyer”) Awards were held at the Arena Stage Theater in Washington DC. Elegant, custom-designed, solid bronze ‘Abby’ awards (photo below - named for the founder of the National Organization for Rare Diseases, NORD founder, Abby Meyer) were presented to:
This week, the Senate is scheduled to vote on another attempt to repeal/replace the Affordable Care Act (aka, Obamacare), this time via a bill known as the Cassidy-Graham proposal. The bill was in jeopardy of failing Friday after Sen. John McCain signaled he would oppose the bill, lengthening the already long odds for its passage. Among other things, the bill would remove protections for preexisting conditions, make deep cuts to Medicaid and end the Affordable Care Act's tax credits and cost-sharing subsidies. The net result, according to a Brookings Institution analysis released Friday? Thirty-two million more people uninsured by 2027, relative to the current baseline.
This list of 80 organizations is almost certainly incomplete, given the substantial universe of advocacy groups focusing their efforts on conditions that sometimes affect only small numbers of people. But it gives a sense of the breadth and depth of the medical community's opposition to Republicans' latest attempt to repeal Obamacare. Strikingly, The Washington Post was unable to identify any medical associations that support Graham-Cassidy*.
President Obama signed what is among the largest healthcare packages since the Affordable Care Act into law, capping more than a year of bipartisan negotiations on the 21st Century Cures Act. The sweeping package of biomedical innovation bills also included legislation to improve U.S. mental health care, funding for several of the administration’s key health initiatives, and money to help states combat the opioid epidemic. Importantly for PF, the “Cures” bill will direct $4.8 billion in funding to the NIH over 10 years.
The nearly 1,000-page legislative package alters the way some products gain Food and Drug Administration (FDA) approval, including placing a greater emphasis on patients' perspectives in the review of drugs. It also establishes an abbreviated new pathway for innovative medical devices, similar to a program that currently exists for prescription drugs. Additionally, the measure changes the leadership structure at the Substance Abuse and Mental Health Services Administration (SAMHSA) and imposes several new transparency requirements on the National Institutes of Health (NIH). Language included in the final package creates and reauthorizes grants for state and community mental health care and encourages more representation from certain populations in clinical trials.
MCLEAN, Va. — NO one who lived through the 1990s would have suspected that one day people would look back on the period as a golden age of bipartisan cooperation. But in some important ways, it was. Amid the policy fights that followed the Republican victories of 1994, President Bill Clinton and the new majorities in Congress reached one particularly good deal: doubling the budget for the National Institutes of Health.
The decision was bipartisan, because health is both a moral and financial issue. Government spends more on health care than any other area. Taxpayers spend more than $1 trillion a year for Medicare and Medicaid alone, and even more when you add in programs like Veterans Affairs, the Children’s Health Insurance Program and the Indian Health Service.
On February 25, 2015, PFA President Paul Fogelberg testified at a Congressional Briefing on Capitol Hill on Pulmonary Fibrosis, hosted by US Representatives Erik Paulsen (R, MN-3) and Steve Cohen (D, TN-9) and Senator Christopher Murphy (D, CT). The event was excellent with nearly 100 people attending.
Please see below for Mr. Fogelberg's prepared remarks.
We are making progress!