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ACC is a rare disease with many variations and patient-specific peculiarities. This is particularly true for metastatic ACC patients as there is no established standard of care nor approved drugs for such patients. Second (or third) opinions are especially worthwhile for unusual or complex cases because different institutions have different expertise and standard protocols, both within and across specialties. Patients should always feel empowered and comfortable in asking for additional opinions.

The following institutions consult on high volumes of ACC patients with advanced and/or complicated cases. They often participate in the most innovative ACC clinical trials and publish the most impactful ACC-related scientific research. These institutions also frequently provide second opinions, even for foreign patients and sometimes online. In the list below, the institutions with expertise in systemic therapy are particularly relevant for ACC patients with widespread growing metastases, and those institutions with expertise in radiation are particularly relevant for ACC patients dealing with tumors in the skull base, lacrimal gland or sinonasal region, especially if inoperable. Most insurance companies permit second opinions.

Area of ExpertiseCountryCityInstitutionLead PhysicianContact Information
Systemic TherapyFranceVillejuifInstitut Gustav RoussyCaroline EvenWebsite (French); Website (International);
Systemic TherapyKoreaSeoulSeoul National UniversityBhumsuk KeamWebsite; Email (International); Phone: 82-2-2072-2890
Systemic TherapyNetherlandsNijmegenRadboud UniversityCarla van HerpenWebsite (English); Website (Dutch)
Systemic TherapyPRCBeijingBeijing Tongren HospitalXiaohong ChenWebsite; Email; Phone: (86) 18811070223; WeChat: acc13304272
Systemic TherapyPRCShanghaiShanghai Ninth People's HospitalGuopei ZhuWebsite; Email (International)
Systemic TherapyUKManchesterNHS The ChristieRobert MetcalfEmail
Systemic TherapyUSAAnn ArborUniversity of MichiganPaul SwiecickiPhone: (1) 734-647-8902
Systemic TherapyUSABostonDana-FarberGlenn HannaEmail
Systemic TherapyUSAHoustonMD AndersonRenata FerrarottoWebsite
Systemic TherapyUSANew YorkMemorial Sloan KetteringAlan HoPhone: (1) 646-497-9161 (request Dr. Alan Ho)
Systemic TherapyUSASan FranciscoUniversity of California San FranciscoHyu KangWebsite (Online); Website (In-Person)
Systemic TherapyUSASeattleUniversity of WashingtonCristina RodriguezEmail: Phone: (1) 206-606-4279
Carbon Ion RadiationGermanyHeidelbergUniversity Hospital HeidelbergThomas HeldWebsite (German); Website (International)
Carbon Ion RadiationItalyPaviaCentro Nazionale di Adroterapia OncologicaEster OrlandiEmail (International)
Carbon Ion RadiationJapanChibaQST HospitalMasashi KotoWebsite (International)
Proton RadiationUSABostonMassachusetts General HospitalAnnie Chan (ACC) & Shannon MacDonald (Lacrimal ACC)Email (ACC - Chan); Phone: (1) 617-726-5184
Email (Lacrimal ACC - MacDonald)