Intimal sarcoma — none of us should face this alone

Intimal sarcoma is one of the rarest cancers there is. That's exactly why there's almost no reliable data, no shared point of contact, and far too little research. Nearly every patient starts from zero.

We want to change that. This initiative brings together patients, families, and treating physicians — as a first step, to explore together whether and how research projects can be started.

Are you affected, or supporting someone who is? Get in touch — every story counts.

contact@intimasarc.com

The biology — and why it gives us a shared path

At the molecular level, intimal sarcoma is in most cases defined by amplification of the MDM2 gene, frequently together with CDK4. Intimal sarcoma is not alone in this: other sarcomas — most notably well-differentiated and dedifferentiated liposarcoma — share the same amplification. That shared biology is a reason for hope, because it means intimal sarcoma can be studied alongside a much larger group of patients and may benefit from drugs developed against the same targets.

The scale is easiest to see in the numbers. Dedifferentiated liposarcoma is itself uncommon, with on the order of 3,000–4,000 new cases worldwide each year (part of roughly 20,000 liposarcomas of all types). Intimal sarcoma is rarer by orders of magnitude — so rare that no reliable incidence figure even exists, with only a few hundred cases described in the entire medical literature to date. On its own, intimal sarcoma will never have enough patients to power a clinical trial. Alongside its far larger molecular cousin, it can.

Targeting MDM2 directly has so far been a series of disappointments: the phase III trials of the MDM2 inhibitors milademetan (2023) and brigimadlin (discontinued in 2025) both failed in dedifferentiated liposarcoma. The picture on the second target, CDK4, is more encouraging. At ASCO 2026, the SARC041 trial showed that abemaciclib — a CDK4/6 inhibitor originally developed for breast cancer — meaningfully delayed disease progression in advanced dedifferentiated liposarcoma, reported as a potential new standard of care.

Two honest caveats. First, that result is in liposarcoma, not intimal sarcoma: the shared biology makes it a promising hypothesis, but there is as yet no proof that the same drug works in intimal sarcoma. Second, even where the rationale is strong, it is currently an open question whether health insurers and manufacturers would approve and fund such a drug outside its licensed indication. Turning a plausible mechanism into a real treatment option for intimal sarcoma patients is exactly the gap this initiative exists to close.



Legal Notice

Philippe Willi
8707 Uetikon am See
Switzerland

 

Contact: contact@intimasarc.com

Privacy Policy

  • The controller responsible for data processing is Philippe Willi, 8707 Uetikon am See, Switzerland, contact@intimasarc.com.

    When you visit this website: Our host Infomaniak Network SA (Geneva, Switzerland) processes technically necessary server log data (including IP address, date/time, and page accessed) to provide the website and ensure its security. This data remains in Switzerland. We do not use analytics or tracking cookies.

    When you contact us: We process the information in your message to respond to your enquiry and stay in touch with you. Your message may contain health data, which qualifies as sensitive personal data under Art. 5 lit. c of the revised Swiss Federal Act on Data Protection (revFADP). We process such data solely on the basis of your explicit consent, which you give by contacting us and may withdraw at any time with effect for the future.

    Disclosure: We do not share your data with third parties unless you separately consent. We retain it only as long as necessary for the purpose, or until you withdraw your consent.

    Your rights: You have the right to access, rectification, and erasure of your data, and to object to its processing, as well as to withdraw any consent given. You may also contact the Federal Data Protection and Information Commissioner (FDPIC, edoeb.admin.ch). Contact: contact@intimasarc.com

    3) Organisations & Resources

    Switzerland

    International

    Research & molecular diagnostics