At the National Urea Cycle Disorders Foundation (NUCDF), our mission has always been to connect, support, and advocate for families affected by Urea Cycle Disorders. Today, we are sharing an important update from our partners at the National Organization for Rare Disorders (NORD) regarding their UCD Patient Assistance Program.
A Message from NORD
We are truly grateful for the opportunity to support you through the Urea Cycle Disorders (UCD) Patient Assistance Program in 2025. At the National Organization for Rare Disorders (NORD), we remain deeply committed to serving individuals and families affected by rare conditions, and it has been our privilege to offer assistance through this program.
As a nonprofit organization, NORD relies entirely on charitable donations to fund our patient assistance programs. Despite our best efforts, we have not been able to secure the necessary funding to continue the UCD program in 2026.
This means we will be unable to provide financial assistance through this program in the coming year, and NORD’s UCD Patient Assistance Program will close on December 31, 2025.
We understand how important this support may be to you and your family, and we share in the disappointment this news may bring. If funding becomes available in the future, we will reach out to let you know.
Thank you for being part of the NORD community. We remain committed to advocating for and supporting individuals living with rare diseases, and we encourage you to stay connected with us for updates and resources.
A Message from NUCDF
We at NUCDF know how vital programs like this are for our community. The closure of this assistance program is difficult news, and we want you to know that you are not alone. Our foundation will continue to:
Provide educational and emotional support to UCD families
Advocate for access to treatment and care
Partner with organizations like NORD to explore future funding opportunities and patient resources
We remain steadfast in our commitment to helping every UCD family find the support they need — through education, community, and connection.
Stay Connected
We encourage all families to stay connected with both NORD and NUCDF for updates, advocacy opportunities, and available resources.
Visit nucdf.org for UCD education and community support
Visit rarediseases.org for broader rare disease programs and resources
Together, we’ll continue to advocate for the needs of our community and work toward a future where every individual living with a Urea Cycle Disorder has the support they deserve.
