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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 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 Expertise Country City Institution Lead Physician Contact Information
Systemic Therapy France Villejuif Institut Gustav Roussy Caroline Even Website
Systemic Therapy Korea Seoul Seoul National University Bhumsuk Keam Website
Systemic Therapy Netherlands Nijmegen Radboud University Carla van Herpen Website (English); Website (Dutch)
Systemic Therapy UK Manchester NHS The Christie Robert Metcalf Website; Email
Systemic Therapy USA Ann Arbor University of Michigan Paul Swiecicki Website; Phone: (1) 734-647-8902
Systemic Therapy USA Boston Dana-Farber Glenn Hanna Email
Systemic Therapy USA Houston MD Anderson Renata Ferrarotto Website
Systemic Therapy USA New York Memorial Sloan Kettering Alan Ho Website; Phone: (1) 646-497-9161
Systemic Therapy USA San Francisco University of California San Francisco Hyu Kang Website
Systemic Therapy USA Seattle University of Washington Cristina Rodriguez Website; Email: Phone: (1) 206-606-4279
Carbon Ion Radiation Germany Heidelberg University Hospital Heidelberg Thomas Held Website (German); Website (International)
Carbon Ion Radiation Italy Pavia Centro Nazionale di Adroterapia Oncologica Ester Orlandi Website; Email
Carbon Ion Radiation Japan Chiba QST Hospital Masashi Koto Website
Proton Radiation USA Boston Massachusetts General Hospital Annie Chan (ACC) & Shannon MacDonald (Lacrimal ACC) Email (ACC – Chan); Phone: (1) 617-726-5184

Email (Lacrimal ACC – MacDonald)

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)