The Ataxia Community Comes Together in Orlando April 9–11, 2026 for the Annual Ataxia Conference! LEARN MORE
The Ataxia Community Comes Together in Orlando April 9–11, 2026 for the Annual Ataxia Conference! LEARN MORE
The following are issues that NAF is following. Click on the title of any issue to learn more or to take action to show your support.
The Health Equity and Rare Disease Act of 2025 aims to increase research and investment in rare disease equity, specifically on conditions that affect minority populations. This would occur through focused research at the NIH, grant awards for this purpose, and specialized physician education and training programs.
The Congressionally Directed Medical Research Program’s (CDMRP) funding was reduced by 57% in FY25 from the FY24 level. Hereditary ataxia is eligible to receive funding through this program, but this decrease has lead to increased competition for a smaller total amount of money. This legislation proposes to restore CDMRP funding for FY25 to the FY24 level to continue funding biomedical research.
This legislation would make it easier for patients to access high costs treatments, like cell and gene therapies. This bill would encourage value-based purchasing arrangements for these treatments to ensure patients are paying for effective treatments.
This legislation encourages drug companies to invest in the development of treatments for rare diseases by increasing the orphan drug tax credit that is available to drug companies that develop these treatments.
This bill would work to lower patient copays by allowing amounts paid on behalf of the patient, by a nonprofit, drug company, or other entity, to count towards their copay- reducing the amount that they are ultimately responsible for paying.
Currently, people who receive supplemental security income (SSI) only maintain eligibility for it if they have less than $2,000 in assets, which does not allow these individuals to save money and create a safety net for themselves without losing these benefits. This threshold has not been updated since 1984. This legislation seeks to raise this number up to $10,000 for an individual and allows for increases on par with inflation.
This bill would incentivize international medical students to work in underserved or rural communities after graduation and increases the number of waivers that states can use for this purpose.
Currently, genetic counselors are not recognized as Medicare providers, meaning they cannot be reimbursed for services through Medicare. This legislation would allow Medicare to reimburse genetic counselors for providing genetic counseling services to patients. This means that Medicare patients could have greater access to high-quality, appropriate genetic counseling from licensed genetic counselors, rather than from physicians who lack specialized training.
This legislation updates the definition of “medical necessity,” aiming to improve patients’ ability to have their medications covered by insurance. Clinical evidence and expert guidance would be included in the definition to increase coverage flexibility. A broader, clear definition could reduce delays and denials for rare disease patients.
This bill would introduce a tax credit for individuals who purchase a mobility device of 50 percent of the total cost of the device. This would effectively lower the burden of purchasing necessary devices, including manual or power wheelchairs, scooters, and walkers.
Nearly 8 in 10 family caregivers incur out-of-pocket caregiving costs that exceed 25 percent of their annual income. This bill would provide a tax credit of up to 30 percent of the cost of qualified caregiving expenses, with a maximum credit of $5,000 per year.
This bill would provide Medicaid coverage of whole genome and whole exome sequencing for children suspected of having rare diseases and other health conditions. Identifying rare diseases in children early through genetic testing would shorten their diagnostic odyssey and expedite their ability to seek appropriate medical care.
This bill allows taxpayers to receive a tax deduction for charitable donations even if they do not itemize their tax deductions- essentially making it easier to be rewarded for donating to charity and to incentivize people to donate.
