How to Find a Doctor Who Can Prescribe Ogsiveo Near You [2026 Guide]

Desmoid tumors affect roughly 2–4 people per million annually, making them one of the rarest conditions in oncology. If you or someone you love has been diagnosed with a desmoid tumor and needs Ogsiveo (nirogacestat), finding the right specialist to manage your care is a critical first step.

Not every oncologist has experience with desmoid tumors. This guide explains who prescribes Ogsiveo, how to find a qualified specialist near you, and how telehealth fits into the picture.

Who Can Prescribe Ogsiveo?

Ogsiveo is not a controlled substance, and it does not require a DEA license. Any licensed physician or prescriber can technically write a prescription for it. However, insurance prior authorization — which is required by virtually all plans — typically requires that the prescription be written by or in consultation with an oncologist.

In practice, the specialists who most commonly prescribe Ogsiveo include:

Sarcoma oncologists: The most experienced providers for desmoid tumors. Sarcoma-specialized oncologists at major cancer centers are typically the first choice for managing this disease.

Medical oncologists with soft tissue tumor expertise: General oncologists at regional cancer centers may have experience treating desmoid tumors, particularly in institutions that see a higher volume of sarcoma cases.

Surgical oncologists: Often the first specialist a patient sees when a desmoid tumor is identified. While they typically don't prescribe systemic therapy themselves, they often refer patients to medical oncologists who manage Ogsiveo.

NPs and PAs in oncology practices: Advanced practice providers working within oncology teams can prescribe Ogsiveo in states where their scope of practice permits.

Why Seeing a Sarcoma Specialist Matters

Desmoid tumor management is nuanced. These tumors can spontaneously stabilize or even regress, which means the decision of when to initiate systemic therapy — and which therapy to choose — requires careful clinical judgment. Specialists at dedicated sarcoma programs:

Are familiar with the full range of treatment options including active surveillance, surgery, systemic therapy, and radiation

Are experienced with Ogsiveo's monitoring requirements (liver function, electrolytes, skin surveillance, reproductive health counseling)

Have established workflows with specialty pharmacies and the SpringWorks CareConnections program

May be aware of clinical trials for new therapies

How to Find a Desmoid Tumor Specialist Near You

Several resources can help you identify specialists with experience treating desmoid tumors:

Desmoid Tumor Research Foundation (DTRF): The DTRF (dtrf.org) maintains a network of physicians with experience treating desmoid tumors. This is often the most direct path to finding a specialist.

NCI-designated cancer centers: Major NCI-designated comprehensive cancer centers — including institutions like MD Anderson, Memorial Sloan Kettering, Mayo Clinic, and Dana-Farber — have dedicated sarcoma programs and significant experience with desmoid tumors.

Second opinion consultation: If you've been diagnosed at a local hospital, consider requesting a second opinion from a sarcoma center. Many major centers offer remote second opinion services.

ClinicalTrials.gov: Active trials for nirogacestat or desmoid tumors will list participating institutions, which are by definition experienced with the drug.

Can I Get an Ogsiveo Prescription Through Telehealth?

The initial diagnosis of a desmoid tumor cannot be made through telehealth — it requires physical examination, imaging, and a tissue biopsy for confirmation. However, once you have an established relationship with an oncologist who manages your desmoid tumor, some follow-up appointments may be possible via telehealth platforms, depending on state regulations and your insurer's coverage rules.

Some large academic centers offer telehealth second opinion consultations or remote ongoing management for established patients. If you live far from a sarcoma center, ask whether your oncologist offers telehealth follow-up appointments.

What to Bring to Your First Appointment

When you see a sarcoma oncologist for the first time, bring the following:

All prior imaging studies (CT, MRI) on CD or digital format, with reports

Pathology reports from any prior biopsy

A complete list of all current medications, supplements, and herbals

Family history (especially relevant if you have Familial Adenomatous Polyposis, which is associated with desmoid tumors)

Questions written down — including questions about Ogsiveo, monitoring expectations, and pregnancy/fertility concerns if relevant

Once you have a prescription in hand, check out our guide on how to find Ogsiveo in stock near you and our overview of what Ogsiveo is and how it's used.