THE AMERICAN END
OF ENDO PROJECT

Breaking News:

VICTORY! Thanks to the efforts of American End of Endo Project, there is finally a proper definition of endometriosis encouraged to be used in federal research.

In March of 2025, AEEP founder Holly Sanneman along with Chelsea Hardesty (Getting the Better of Endo), Hannah Foerster (Spicey), and Aubrey Svensson (AEEP, Medical Student) travelled to Washington DC with stunning, proprietary books to leave with the senators for their continued education. This team's tireless educational efforts ensured that twenty-two senators were educated thoroughly about endometriosis and the manifold struggles patients face.

Moved by the information and stories they heard, the team was met with enthusiastic bi-partisan support.

After the meetings in DC, AEEP continued to work with officials and secured the support of even more congressmen. Senator James Lankford (R-OK) was the congressman who championed the cause and took AEEP's verbiage to the FY26 Appropriations Bill. This annual bill is the "discretionary spending bill" but can also use "report language" to help drive how funds are used. Thus, by having an updated, correct definition of endometriosis within that bill, research efforts within the NIH will be directed more properly.

Though the overall situation of the government has been challenging in the last several months and though many of the factors of the overall Appropriations Bill have been controversial, our verbiage contained within shines as a beacon of hope. It passed in the Senate, the House, and now it has been signed by the president.

Patients and advocates have been "shouting from the mountaintops" for ages, seeking to make movement in how endometriosis is researched and ultimately treated. Now, for the first time ever, the federal government is encouraged to use updated, evidence-based language. The bill reads:

NIH is encouraged to use an updated,
evidence-based definition of the disease, aligning with current scientific understanding that characterizes it as a chronic, systemic,
and inflammatory condition. This aims to ensure the development
of effective diagnostics and treatments reflect endometriosis’ full
clinical reality (i.e., not solely a reproductive condition) as it can affect every major organ in the body.  Read the full text here on page 130

This win is both a monumental win and a mere baby step in the right direction. For the first time in history, endometriosis research is being guided by language that is intended to end the pigeonholing of endometriosis as a "reproductive disease" affecting a subset of women. Does the funding still need to happen? YES. Does the research itself need to happen? YES. Does it need to be easier for all endo patients to access the best possible care? YES. There is much that needs to happen still.

The foundation has been laid. Now is the time for advocates everywhere to work harder than ever to improve everything about how endometriosis is handled.

Unity is key. This progress was made with emphatic bi-partisan support because, with AEEP's educational efforts, congress was able to see that endometriosis is a HUMAN, PUBLIC HEALTH issue and affects every facet of life, from family to economy.

Fight the system, not each other.

Let's continue to make history together.