Chronic and rare disease patients face battles every day that other Americans do not have to deal with. From access to adequate health care, to the cost of treatment and medications to treat their conditions—Policy issues can present opportunities to make meaningful, lasting change for everyone.
National Organization for Rare Disorders Mission StatementWe improve the health and well-being of people with rare disease by driving advances in care, research and policy.
United Healthcare and Prisma Health remain at the negotiation table two months after failing to reach an agreement over a price increase, leaving 58,000 South Carolinian patients disconnected from their healthcare providers.
Tiara Green, Interim CEO of Accessia Health March 17, 2024 Access to equitable, quality healthcare is a familiar and longstanding struggle for many U.S. families
State and National Patient Advocacy Organizations and nonprofits who work and advocate to support chronic and rare patients in South Carolina
Industry, Consultants, Researchers, Hospitals Associations, Universities who support patients access to treatment
Organizations and state agencies who care greatly about patient health care
URGENT REQUEST A hearing has been granted for H.3618 Pharmacy Benefits Bill on Thursday, February 8th, 2024 @ 9:00AM in Room 403 of the Blatt
***URGENT REQUEST!*** We just learned that our bill, H.3309, will be heard and considered by the K-12 Subcommittee Meeting TOMORROW (January 17) at 10:30am in
WASHINGTON – Today, Senator Tim Scott’s (R-S.C.) and Senator Cory Booker’s (D-N.J.) Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2023 passed out of the Senate Committee on Health, Education, Labor and Pensions. This legislation reauthorizes the Health Resources and Services Administration’s Sickle Cell Disease Treatment Demonstration Program beyond fiscal year 2023 through fiscal year 2028.
The All Copays Count Coalition comprises more than 80 national 501c3 non-profit, non-partisan patient advocacy and provider organizations representing millions of people living with serious, complex, chronic illness. The people we represent need full and ongoing access to medical care, including specialty medications, to treat their conditions and to keep them healthy.
H. 3618 General Bill Summary: Pharmacy Benefits. Sponsor: Rep Henegan. Introduced in the House on January 11, 2023.
H. 3309 General Bill Summary: Seizure Safe Schools Act. Sponsors: Reps. Gilliam, Pope, Erickson, Bradley and Davis. Introduced in the House on January 10, 2023.
