Washington, DC, July 6, 2022 – NORD was founded in 1983 with the mission of improving the lives of people living with rare diseases by expanding their access to critical and timely diagnostics, services, treatments, and cures. The ability of our community to access the appropriate medical procedures and care they need, when they need it, is of the utmost importance for their health, well-being and survival. NORD is deeply concerned that the Supreme Court’s decision in the Dobbs v. Jackson case to remove the constitutional right to an abortion will leave those affected by rare diseases without care options.
Recognizing there are passionate views on both sides of this issue, NORD has always been driven by the strong belief that all patients deserve the medical care that is best suited for their situation. With over 7,000 rare diseases, each with small patient populations and their own clinical manifestations, often there is more unknown about these conditions than what is known. Research makes it abundantly clear that for some rare conditions, the conditions themselves or the treatments associated with them, make it unsafe for a patient to be pregnant due to the higher risk for life-threatening complications, for the mother and the baby. Additionally, abnormalities detected in utero may be incompatible with sustained life. Under some state laws, both patients and their clinicians face legal risks for these circumstances that are beyond their control. These difficult health care decisions must be made between the patient, their families, and their health care provider without the fear of criminal reprisal.
There are many questions that remain unanswered in the wake of the Supreme Court’s decision, and this situation is rapidly evolving in numerous states, but we stand in solidarity with rare disease patients who are worried about the impact this decision will have on their lives. While we monitor developments, NORD will continue to advocate for the ability of rare disease patients to access the health care services they need. For those looking for more information on the various protections and services available to them, please visit reproductiverights.gov.
About the National Organization for Rare Disorders (NORD)
The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases in the United States. NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. Since then, the organization has led the way in voicing the needs of the rare disease community, driving supportive policies, furthering education, advancing medical research, and providing patient and family services for those who need them most. Together with over 300 disease-specific member organizations, more than 17,000 Rare Action Network advocates across all 50 states, and national and global partners, NORD delivers on its mission to improve the lives of those impacted by rare diseases. Visit rarediseases.org.