Support RAAP and its efforts to affect policy change at the state and federal levels to help ensure rare disease patients can easily and affordably access the care they need.
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What Your Donation Supports
In 2016, RAAP has developed a proposal to amend the existing Medicare Part D coverage gap discount program statute to require capping the patient cost-sharing obligation for orphan medicines in catastrophic coverage. Click here to learn more.
The CURES 2.0 effort is an opportunity to bring rare patients and specialists into Medicaid and Medicare decision-making processes both at the federal and state levels. RAAP supports inclusion of rare patient input into payment and access reviews, deliberations and decision-making. Click here to learn more.
Through a collaboration with NCSL, we provide the organization with background information on rare disease, new innovations in treatment and the challenges of access to care. Our goal is to bring knowledge and understanding of rare diseases to state policymakers and stakeholders that can better inform decision making.
RAAP is very excited to have worked with NCSL to launch a new section to the NCSL website with educational information and detailed analysis on rare and orphan diseases. We encourage you to learn more and visit the site: https://www.ncsl.org/research/health/rare-and-orphan-diseases.aspx
THE REINSURANCE PROJECT
In 2019, RAAP members identified the need for a novel reinsurance pool to provide better spreading of risk for rare, high-cost therapies. We propose the creation of a reinsurance program that could offer coverage for a list of high-cost therapies through stoploss insurers, State Medicaid programs and reinsurers. More information coming soon.
THE PATIENT-FOCUSED MEDICAID IMPERATIVE
Click here to learn more.
In early 2020, RAAP’s current Community-level initiatives include:
STRIDE will be a state-focused rare disease gene therapy educational campaign that provides programs and content to help rare disease stakeholders and key decision makers implement strategies that facilitate patient access to transformative cell and gene therapies. More information on this project will be forthcoming, however, please visit, www.healinggenes.org for more educational information.
Rare Access Action Project is a 501(c)4 organization. As per the IRS: Contributions to civic leagues or other section 501(c)(4) organizations generally are not deductible as charitable contributions for federal income tax purposes. They may be deductible as trade or business expenses, if ordinary and necessary in the conduct of the taxpayer's business.
Rare Access Action Project
P.O. Box 2756
Purcellville, VA 20134