NORD’s Assistant Director of Public Policy, Paul Melmeyer, authored this great piece (below) in the March 2015 issue of the NCC Collaborator, the monthly publication from the National Coordinating Center for the Genetic Service Collaboratives (NCC). NCC focuses on bringing quality genetic and newborn screening services to local communities, and building bridges between public health, primary care/ Medical Home, geneticists and other specialists, and families and consumers. You can read the piece and March issue online here.
Since the passage of the Affordable Care Act in 2010 and the subsequent Supreme Court decision allowing states to decide whether to expand their Medicaid programs, decisions about healthcare coverage and quality standards for patients with rare diseases are increasingly being made at the state level. From public health initiatives, such as newborn screening programs, to insurance plan structure and coverage regulations, state governments play an integral role in facilitating the access of quality, affordable care for individuals with rare diseases.
For 31 years, the National Organization for Rare Disorders (NORD) has served as America’s leading patient advocacy organization for patients with rare diseases. Following the passage of the Orphan Drug Act in 1983, NORD has been involved in numerous Federal policy initiatives, including the Rare Diseases Act of 2002, the Affordable Care Act, and the Food and Drug Administration Safety and Innovation Act (FDASIA), among others.
Beyond our policy efforts, NORD represents over 220 organizations for individuals with rare diseases and provides education and coordination services for patients and their families. read more >
As part of Operation Wear Red (March 1-7, 2015) to raise awareness for the rare disease aplastic anemia, NORD staff are wearing red to join our member organizations Aplastic Anemia and MDS International Foundation and Julia’s Wings Foundation. Learn more about the campaign with this handout or by visiting http://aamds.org/node/3761. You can learn more about aplastic anemia in NORD’s Rare Disease Database, here.
Rare Disease Day is here! Celebrated on the last day of February–the rarest day on the calendar–this is the one day every year when the world comes together to improve the lives of people living with rare diseases.
NORD is proud to work with our partners as the official sponsor of Rare Disease Day in the U.S. Here are a few ways you can get involved to help make this the most impactful Rare Disease Day yet.
Social media awareness - Together we can grow awareness. Change your profile picture to the ”I SUPPORT Rare Disease Day” badge (pictured) and encourage others to do the same. Share photos, updates and videos using the hashtags #RDD2015, #RareDiseaseDay and #1in10. You can find us on Twitter @RareDayUS, Facebook /RareDiseaseDay.US and instagram @rarediseasedayUS.
Sophia Walker, a medical student and NORD volunteer, has written an op-ed piece on “The Importance of Rare Disease Education” that was published this afternoon on Medscape and is being promoted specifically to medical students.
The article is one of several currently being developed by NORD staff in collaboration with Medscape as part of NORD’s expanded outreach to medical professionals to promote earlier diagnosis and optimal treatment for patients.
A student at the University of Connecticut School of Medicine, Sophia became interested in rare diseases while in high school after hearing a NORD staff member speak.
On a related note, NORD representatives — and several rare disease patients — will participat in the American Medical Student Association annual convention this week in Arlington, Virginia. NORD will host a “Meet the Patients” event in its booth at the convention.
RareDisease Dialog is the official blog for the National Organization for Rare Disorders (NORD). NORD’s staff and friends will share information of interest to the entire rare disease community.
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