Strickland Leads Colleagues in Letter Slamming Administration’s Threats to Rare Disease Research

Washington, D.C. – Today, Congresswoman Marilyn Strickland (WA-10) sent a letter, alongside her democratic colleagues, to U.S. Office of Management and Budget Director Russell Vought, slamming the Administration’s proposed rule to change how scientific research is reviewed for federal grants – specifically jeopardizing rare disease research for minority communities. “We are particularly concerned about how this proposal will set back progress on rare disease research. The rare disease community relies on federal health agencies that are essential to supporting timely diagnosis, conducting research, enabling therapy development, and implementing public health programs,” said the lawmakers. The Trump Administration routinely threatens Diversity, Equity, and Inclusion (DEI) initiatives. Under the new proposed rule, minority patients facing rare diseases are at a greater risk of losing access to a timely diagnosis, treatment development, and proper peer-reviewed research. “Eliminating fact-based, scientific structures that help our most vulnerable populations live healthy lives is irresponsible and unacceptable. We respectfully request you reverse course on this proposal for the safety, health, and wellbeing of American families, and we ask you to consider the irreversible consequences this will have on the rare disease community,” the lawmakers concluded. Read the full letter here, or below. July 23, 2026 The Honorable Russell Vought Director Office of Management and Budget 725 17 th St. NW Washington, DC 20503 Dear Mr. Vought, We write to you with strong concerns about the Office of Management and Budget’s recent proposed rule which will change how scientific research is reviewed for federal grants. [1] The United States is a global leader in scientific research because of our merit-based and peer-review processes. By allowing politics to govern science, the Administration’s proposed changes will have devastating impacts on the lives of millions of Americans. According to reports, health funding would be the most impacted. [2] We are particularly concerned about how this proposal will set back progress on rare disease research. The rare disease community relies on federal health agencies that are essential to supporting timely diagnosis, conducting research, enabling therapy development, and implementing public health programs. There are approximately 30 million people in the U.S. living with a rare disease, and there are over 6,800 different rare diseases, with new discoveries every year. [3] Over 95% of these conditions do not have an FDA-approved treatment. [4] Because these diseases impact a smaller percentage of the population, cures and innovative treatments are more challenging to discover, but U.S. scientists have made incredible strides over the last several decades. Federal funding has spurred innovative collaborations, built infrastructure to attract private investment, and helped ensure our nation remains a global leader in working to cure diseases that were once deemed too rare or complex to treat. For decades, the peer review process has been the gold standard of validating scientific research. If political appointees are given the authority to directly intervene and approve or deny federal grant funding, rare disease research will suffer. Rare disease patients face unique challenges at all phases of care, especially those from minority communities. These communities have historically been underrepresented in clinical trials and face wide-ranging inequities and barriers to care, diagnosis, and treatment. Federal funding is critical in filling the gaps that exist in rare disease research, but the Administration’s proposal puts this all at risk. For children and adults with rare diseases, even a momentary pause in funding for these programs or agencies has devastating, life-altering consequences. We must protect the merit-based scientific review process to ensure everyone has access to the lifesaving medications, clinical trials, and studies. The Administration has a record of targeting Diversity, Equity, and Inclusion (DEI) initiatives. Because rare diseases have a significant impact on minority and underserved communities, and these communities already face barriers to care, we are concerned that the politicization of science will disproportionately impact these patients. Minority rare disease patients are not a monolith and need specialized, unbiased, scientific research that informs their care every step of the way. In a time when our healthcare system is already strained because of soaring healthcare costs and cuts to federal support systems, the rare disease community cannot be left any further behind. Eliminating fact-based, scientific structures that help our most vulnerable populations live healthy lives is irresponsible and unacceptable. We respectfully request you reverse course on this proposal for the safety, health, and wellbeing of American families, and we ask you to consider the i