Urgent Action Needed: Support Funding for the UDN

19 Jun Urgent Action Needed: Support Funding for the UDN

Posted at 20:24h in News, Press Release by

By Adaline Dunnberg | June 19, 2023

Your voice and actions matter! We need your immediate assistance in advocating for continued funding for the Undiagnosed Diseases Network (UDN). As the House and Senate finalize their 2024 budgets, we must ensure that the UDN receives the necessary support to continue its vital work in diagnosing and providing hope to individuals and families affected by undiagnosed conditions.

Thanks to patient advocacy efforts, the UDN is currently funded through FY 2023. We must continue to advocate for funding to support the UDN in 2024 and beyond. In the face of potential budget cuts, we must rally together to protect the future of the UDN and its impact on the lives of thousands of individuals. 

Let’s raise our voices and advocate to support funding for the UDN in next year’s congressional appropriations bill. You can make a difference by contacting the House and Senate leaders listed below and sharing what the UDN has personally meant for your family. Consider these tips and tricks:

    1. If you live in AL, CT, FL, HI,  IL, KS,  LA, MS, NH, OR, RI, SC, WA, WI, or WV, please contact the legislator for your state expressing your support for the UDN. 
    2. To identify your state senator and state representative and their contact information, enter your zip code at https://justfacts.votesmart.org/. 
    3. Call your senator or representative’s office and ask for a healthcare staffer’s email address. Include the staffer’s email address in your letter. 
    4. Time is of the essence! Please contact your legislators by Friday, June 23, starting with members of the House.

Sample Letter

Dear The Honorable [Legislator’s Last Name]:

[Personal story] I am a nurse and longtime resident of St. Louis, MO. In addition to my full-time work, I also volunteer with the Undiagnosed Diseases Network (UDN) site at Washington University as a family liaison. My history with the UDN goes back many years because my oldest son, Mitchell’s, mysterious disease was ultimately solved and discovered by the UDN in 2018. He became the first patient to be diagnosed with a disease that would be named after him by the researchers – Mitchell Syndrome. We are now up to 15 patients worldwide that have been found to also have Mitchell Syndrome, and my husband and I have started a foundation to support the patients and families and encourage research into a treatment. Mitchell died in 2019 before he was able to try an experimental treatment that has been shown in laboratory studies to possibly improve symptoms.

You can learn more about my son from this NBC news story in 2019.

[Message body] Every year thousands of patients face uncertainty when healthcare providers are unable to discover the cause of their symptoms. Backed by the National Institutes of Health, the UDN seeks to provide answers for patients and families affected by these mysterious conditions. The UDN currently consists of 12 clinical sites around the United States, a coordinating center, a metabolomics research core, a genomic sequencing core, two model organism screening centers, and a biorepository. Over the last 10 years, the UDN has evaluated over 2,000 patients and provided diagnoses for one-third of those enrolled.

I am writing as your constituent to urge you to support the inclusion of UDN funding in the 2024 congressional appropriations. I am asking for your support to keep the UDN funded in the 2024 budget at a level no less than the 2023 level. For families like mine, the UDN is the last hope for receiving a diagnosis and possible treatment for these ultra-rare diseases.

Thank you very much for considering my request.

 

Sincerely,
[Your Full Name]
[Your Email Address]
[Your Phone Number]

Key Legislators to Contact

Senators

Representatives (Majority)

Representatives (Minority)