Established in Carmer 1180, Buenos Aires C1426NZ (Argentina). VAT number: AR30645337979.

From March 14, 1994, the Institute Alexander Fleming opened its doors for the medical and scientific excellence. Alexander Fleming is the first private institution in Latin America devoted to prevention, diagnosis and integral treatment of patients with cancer. Its force is the medical excellence performed in optimal conditions, with high complexity technology, put to the service of patients and society, from persistent labor in investigation and teaching. The Institute is associated to the Faculty of Medicine of the University of Buenos Aires in order to fulfill high academic and scientific goals.

Alexander Fleming, is the first Argentina´s Institution authorized by the National Marrow Donor Program in United State (N.M.D.P.) to realize transplantes of bone marrow from not related donors. Today, with the great investments in infrastructure of internment and high complexity technology, is outlined the medical quality, the technician – scientist high level and comfort, being one of the most prestigious institutions of the country.

Members:

• Matías Chacón, Medical Oncologist and Partner Leader
• Tomás Soulé, Finalizing Clinical Oncologist with Translational Profile
• Andrés Rodriguez, Clinical Oncologist Responsible of Educational Area
• Adriana Foltan, Medical Leader in Communication and Dissemination
• Guido Lutter, Pathologist
• Martín Angel, Medical Oncologist
• Yanina Pfluger, Medical Oncologist
• Laura Mangino, Occupational Therapist and Data Entry
• Alejandra Boubet, Financial and Administrative Manager

Established in Rue Laennec 28, Lyon 69373 (France).

The Centre Léon Bérard (CLB) is part of the twenty French Comprehensive Cancer Centers, providing a global management of cancer patients on a unique area, from diagnosis to treatment and beyond. The Centre is a regional, national and international recognized reference cancer Centre assigned with three essential missions: Care, Research and Education and is willing to continuously improve the quality and accessibility of care for cancer patients. More than 30,000 patients are received each year, on consultations or exams and 6,000 new cancer cases are diagnosed.

The CLB has technical and treatment facilities (operating rooms, radiation therapy center, medical imaging departments, pathology and nuclear medicine departments). The bench-to bedside process is one of the strength of the Centre Léon Bérard. The Centre Léon Bérard develops an excellence and multidisciplinary research, in association with the cares carried out on site and institutional and private partners. The foundations of this development lay in the medical and scientific project. The CLB aims to reinforce the bench-to-bedside process by facilitating translational research to help innovation and speed-up its access to patients for diagnoses and therapies. Clinical research has been certified ISO 9001 since 2013 and is thus one of the strength of the Centre. As a result, more than 20% of patients were included in clinical trials in 2016. At the Centre Léon Bérard 1,700 persons work in cares, research, education and supportive care (200 physicians, 500 researchers, 600 caregivers). CLB is a reference center within the European Reference Network (ERN) EURACAN.

Members:

• Jean-Yves Blay, Medical Oncologist and Partner Leader
• Armelle Duifresne, Medical Oncologist
• Mehdi Brahmi, Medical Oncologist
• Francois Gouin, Surgeon
• Isabelle Ray-Coquard, Medical Oncologist
• Marie Karanian, Pathologist
• Pierre Meeus, Surgeon
• Julien Bollard, Project Manager

Established in Via Venezian 1, Milan 20133 (Italy). VAT number: IT04376350155.

Fondazione Istituto Nazionale Tumori, Milano, Italy (INT) is the largest comprehensive cáncer centre in Italy. Since its establishment (1928), it has aimed to provide the highest standards of cancer care and to pursue preclinical and clinical research in such a way as to swiftly translate innovation into better prevention, diagnosis, therapy and rehabilitation for Italian cáncer patients. INT has a long-standing record on rare cancers, serving as one of the Italian reference centers for several rare cancers, including childhood cancers, sarcomas, head & neck cancers, peritoneal and pleural mesothelioma and thymoma, neuroendocrine tumors, male genital tumors, rare female genital cancers, lymphomas and myeloma. INT coordinates the Italian Rare Cancer Network, i.e., a healthcare national network exploiting telemedicine for distant rare cancer case-sharing between reference centers and medical oncology facilities.

Description of the department contributing to the execution of the project

Medical Oncology Unit 2 (“Mesenchymal adult tumors & Rare cancers”) is a medical oncology facility exclusively devoted to a family of adult rare solid cancers, i.e., sarcomas. This Unit coordinates the Italian Rare Cancer Network, and works in close collaboration with the Italian Sarcoma Group (the Italian collaborative research group on sarcomas), Rare Cancers Europe (a multi-stakeholder European effort on rare cancers), the EORTC Soft Tissue and Bone Sarcoma Group. The Unit has been actively involved in the production of clinical practice guidelines on bone and soft tissue sarcomas at a national and European level. It will also coordinate the forthcoming EU Joint Action on Rare Cancers, aiming to produce consensus-based recommendations about rare cancers to improve epidemiological surveillance, quality of healthcare, availability of clinical practice guidelines on rare cancers, innovation and patient empowerment, with a view to the implementation of the new European reference Networks on rare cancers. INT is a reference center in sarcoma within the European Reference Network (ERN) EURACAN.

Sarcoma Service is a surgical facility entirely devoted to the care of soft tissue sarcoma, gastrointestinal stromal tumors and desmoid tumors patients. It is one of the largest Surgical facilities in Europe. Every year some 1500 new patients are seen in consultation in our clinics. 400 of them are then operated at our institutions: of them some 220 are affected by soft tissue sarcoma of the extremities and trunk wall, 150 by abdominal sarcoma (including retroperitoneum, GIST and gynecological sarcoma), 30 by bone sarcoma of the trunk. In addition some 200 patients affected by desmoid tumor are regularly seen in our clinic. The Service holds an institutional prospectively maintained data base which gathers clinical and biological information on over 9000 patients affected by soft tissue sarcoma, desmoid and GIST, treated over the past 3 decades in Milan. Along with the medical ocology unit it chairs the sarcoma track of the Italian Network of Rare Cancers and the European Reference Network on adult rare canceers (EURACAN). It is involved in the board of the Italian Sarcoma Group, of the EORTC Soft Tissue and Bone Sarcoma Group, of the Italian Society of Surgical Oncology, of the European Society of Surgical Oncology, of the Society of Surgical Oncology. It is in the faculty of the new WHO Soft Tissue and Bone Sarcoma classification. It has initiated a large collaborative Network on retroperitoneal sarcoma (Transatlantic Australasian RetroPeritoneal Sarcoma Working Group – TARPSWG), which involves over 50 institutions worldwide. It chairs the European School of Soft Tissue Sarcoma Surgery of the European Society of Surgical Oncology. It hosts the elective rotation of Surgical Oncology fellows from Europe and North America, with a specific link with the program at the University of Toronto – Canada.

Members:

• Paolo Giovanni Casali, Medical Oncologist and Partner Leader
• Paolo dei Tos, Pathologist
• Annalisa Trama, Epidemiologist
• Silvia Stacchiotti, Medical Oncologist
• Bruna David, Medical Oncologist
• Silvia Brich, Biologist
• Paola Colini, Pathologist
• Alessandro Gronchi, Surgical Oncologist

Established in Rua Prof Antonio Prudente 211, Sao Paulo 01509010 (Brazil).

The ACCCC, founded in 1953, has a unique history in fighting cancer. The Center has pioneered all aspects of cancer treatment, education, and research in Brazil. The Institution was the first dedicated to treatment of patients with cancer (1953), to have a residency program in Oncology (1953), to establish a Pediatric Oncology Department (1964); to perform the first breast conserving surgery in Brazil; to partner with an International Basic Research Institute – The Ludwig Institute for Cancer Research (1983 – 2010); to structure a Biobank certified by the National Research Ethics Committee (1997); and to implement a graduate program in Oncology in a private Institution recognized by the Ministry of Education. During all these years, the Institution has been providing prevention, diagnosis, treatment, education, and research (basic, translational, and clinical). Taken together, these activities show the pioneering role ACCCC has filled as a Cancer Center. Indeed, in 2011 the Institution changed its name from Hospital do Cancer A.C.Camargo to A.C.Camargo Cancer Center.

Members:

• Celso Mello, Medical Oncology and Partner Leader
• Ademar Lopes, Chief of the Sarcoma Team
• Fernando Augusto Campos, Medical Oncologist
• Tiago Goss dos Santos, Investigational Oncologist
• Antonio Nascimento, Pathologist
• Felipe D’Almeida Costa, Pathologist
• Samuel Aguiar Junior, Pathologist

Established in Avenida 16 Calles 10 y 14 Heredia, Heredia 40101 (Costa Rica).

The Foundation was legally stablished on June 8th, 2012 by Amelia Barquero Trejos and Jorge Álvaro Chaves Villalobos, hematologist; in order to support patients suffering from cancer and their relatives located in Heredia, Costa Rica.

The Foundation is made up of Heredian citizens from different cantons and various disciplines that serve ad-honorem, donate their time in favor of the success of the Foundation’s own projects.

The mission of the organization is based on the principles of solidarity, work, love and respect for others; joining efforts to support the patient suffering from cancer in Heredia. FUNDAEVI reaches this goal trough the development of projects and the promotion of healthy lifestyles in the entire population of the province of Heredia as well as the psycho-education of cancer as a measure of containment in the face of the emotional and social impact that the cancer diagnosis produces in the patient and their relatives.

Members:

• Natalia Jiménez, Medical Oncologist and Partner Leader

Established in Calle Velazquez 7 3rd Floor, Madrid 28001 (Spain). VAT number: ESG81890212.

The Spanish Group for Research on Sarcomas (Grupo Español de Investigación en Sarcomas, GEIS) is a non-profit medical research association dedicated to improve the outcome of Spanish sarcoma patients through research and dissemination. GEIS is composed of more than 500 members from over 110 Spanish hospitals, including medical oncologists, radiotherapists, pathologists, surgeons, radiologists and basic researchers. The goals of GEIS are to empower sarcoma clinical research through the design and execution of cooperative clinical trials with relevant results for the treatment of sarcoma patients, to establish diagnosis and treatment guidelines based on the best evidence, and to serve as a point of reference for the treatment of sarcomas, collaborating with similar groups at international level. Since its foundation, GEIS has carried out more than 60 multicentre clinical studies in sarcomas at both national and international levels. GEIS is Spain’s leading research organization in sarcomas and via its national network of associated hospitals, covers the majority of the Spanish territory, has the capacity to design and develop clinical trials with nationwide recruitment potential.

Members:

• Claudia Valverde, President of GEIS, Medical Oncologist and Partner Leader
• Patricio Ledesma, Financial Manager
• Melissa Fernández Pinto, Project Manager
• Adriana Rojo, Project Manager
• Antonio Gutiérrez, Statistician

Established in Avenida San Fernando 22, Mexico 01480 (Mexico).

The National Institute of Cancerology is a decentralized organization of third level, linked to the Ministry of Health. It provides specialized medical care to cancer patients and is also a referral center and cancer’s governing body in Mexico. It is part of a comprehensive system of 12 highly specialized hospitals that provide public health services to the population. Since 1980, importance was placed on the developed areas of Basic and Clinical Research. With regard to equipment, the Institute placed among the best oncologic units in the country.

The Institute has achieved international recognition for its participation with institutions such as the American Society of Clinical Oncology (ASCO), the International Union Against Cancer (UICC), the University of Texas MD Anderson Cancer Center (UTMDACC), and the National Cancer Institute (NCI) of the National Institutes of Health (NIH) in the U.S. The INC is the coordinator of 25 State Cancer Centers (CEC) in Mexico, thus offering a unique possibility for designing common programs and strategies for better cancer control of a national character, and for achieving an impact at the national level on improving cancer prevention and early detection, reducing the morbi-morbility of cancer in Mexico.

An Information Center (INFOCANCER) was established for patients with cancer, their relatives, and for the public in general. Its objective is to provide simple and accessible information to the general public on cancer.

INC coordinates the development of the National Program of Control of Cancer (PNCC), which includes five central themes:

• Prevention and early detection of cancer.
• Oncological guides for the 10 most frequent neoplasms in Mexico.
• Palliative care.
• Medical infrastructure and Medical services administration.
• Control of tobacco consumption.

Members:

• Jorge Luis Martínez Tlahuel, Medical Oncologist and Partner Leader
• Claudia Haydée S. Caro Sánchez, Pathologist
• Mario Cuellar Hübbe, Oncologist Surgeon
• Héctor Martínez Said, Oncologist Surgeon
• Jorge Alegría Baños, Medical Oncologist
• Dorian Yarih García Ortega, Oncologist Surgeon
• Nora Álvarez Águila, Radio-Oncologist

Established in Avenida Angamos Este 2520 Urb La Calera de la Merced, Lima (Peru). VAT number: PE20514964778.

The National Institute of Neoplastic Diseases, better known as INEN, is a Peruvian public hospital managed by the Ministry of Health of Peru. Founded by Law Nº8892, which established the creation of the National Cancer Institute. This hospital provides health services to the population suffering from different types of cancer. The National Institute of Neoplastic Diseases is an institution specialized in the detection, diagnosis, treatment and rehabilitation of tumoral or neoplastic diseases.

Members:

• Víctor Castro Oliden, Medical Oncologist and Partner Leader
• Sandro Casavilca Zambrano, Pathologist
• Lourdes Huanca Amesquita, Pathologist
• Mónica Calderón Anticona, Medical Oncologist
• Juan Carlos Haro Varas, Medical Coordinator
• Martín Falla Jiménes, Medical Oncologist
• Marco Velarde Méndez, Medical Oncologist
• Alberto Lachos Dávila, Radiotherapist
• Darwin Salazar Salazar, Medical Traumatologist Oncologist
• Macarena Farias Loza, Coordinator
• José Manuel Cerapio Arroyo, Administrative Coordinator

Established in Via Di Barbiano 1/10, Bologna 40136 (Italy). VAT number: IT00302030374.

The Rizzoli Orthopedic Institute (IOR) is the only Italian orthopedic public hospital recognized as a National Institute for Research and Health Care (IRCCS). It comprises therefore treatment and research where its high level of healthcare is the result of intense scientific research with the aim to transfer these research results into clinical practice. Its high expertise; its model of organization aimed at integration between research and treatment and the offer of high quality healthcare as well as innovative technologies in continuous evolution are the strengths that make the Rizzoli Institute one of the most clinically and scientific recognized site of excellence in orthopaedic. It is organized in Departments that group wards and healthcare services and research laboratories. The units are specialized in: treatment of tumors of the musculoskeletal system, degenerative pathologies of the hip and knee; spine pathologies, pathologies of the foot and upper limbs; sports pathologies; pediatric orthopaedic pathologies; and diagnosis and treatment of rare skeletal diseases. Musculoskeletal oncology is one of the main field of interest and excellence of the Institute. The Institute founded and chair the Italian Sarcoma Group (ISG): the Italian network that comprises all the professionals involved in treatment and research in sarcomas, committed to the study, development and share of best practices in sarcoma management. Both IOR and ISG are partner of Alliance Against Cancer (ACC) that is the Italian Minister of Health network for research and care in oncology. IOR is a reference center in sarcoma within the European Reference Network (ERN) EURACAN.

Description of the department contributing to the execution of the project

Sarcoma treatment, management and research are the main fields of interest and excellence of the Institute. About 50% of all new cases of Italian primary malignant bone tumors (and about 20% of soft tissue sarcomas) are yearly treated, in a dedicated Department of Orthopedic Oncology (40 beds), in a Department of Spine Orthopedic Oncology, and in a dedicated Department of Medical Oncology (pediatric and adult) with 13 beds, including a Transplant Unit for high dose treatments. Phase I, II and III clinical trials are regularly performed in the Institute. Regarding translational research, the Laboratory of Experimental Oncology, connected also to the Surgical Pathology Department, has an experience of more than 20 years in the field with about 30 young and senior researchers. Studies performed in the Laboratory has contributed to definition of clinical studies (i.e. IGF in Ewing and osteosarcoma, P-glycoprotein in osteosarcoma). A specific musculoskeletal biobank with more tan 7.000 frozen specimen is also available for the project, including material from the rarest neoplasms, with homogenous clinical data. Through the ISG network, founded and leaded by the Director of the Laboratory of Experimental Oncology, Dr. Piero Picci, IOR is a point of reference for the improvement of quality of the overall management and treatment of sarcoma patients by promoting and sharing the best national and international practice guidelines and expertise through all the ISG network members. On 1974 the Musculoskeletal Oncology Departments developed a specialistic educational program (The Course on Musculoskeletal Pathology) addressed to Orthopedic Surgeons, Pathologists, Radiologists, Oncologists, Radiotherapists and Basic Researcher with the aim of s to improve knowledge and competence on these pathologies, by working in multidisciplinary teams. The course is now at its XXIXth edition. The Pathology Department is the Italian reference center for the Italian Association of Pediatric Oncohematology (AIOP) for the diagnosis of pediatric tumors.

Members:

• Alberto Righi, Pathologist and Partner Leader
• Emanuela Palmerini, Medical Oncologist
• Davide Maria Donati, Orthopedic Surgeon
• Katia Scotlandi, Biologist
• María Cristina Manara, Medical Oncologist

Established in Untergasse 36, Wolfersheim 61200 (Germany). VAT number: DE268771102.

Sarcoma Patients EuroNet Association (SPAEN) is the international network of sarcoma, GIST and desmoid patient advocacy groups. It was founded in April 2009 with the aim of extending information services, patient support and advocacy to patient organisations for the benefit of sarcoma patients across the whole of Europe and internationally. Acting in partnership with clinical experts, scientific researchers, industry and other stakeholders SPAEN is working to improve the treatment and care of sarcoma patients through improving information and support, and by increasing the visibility of sarcoma with policymakers and the public.

SPAEN’s objectives are:

• Identify problems, challenges, access issues and unmet medical needs in sarcomas. Find solutions and improve the situation by collaborating with leading sarcoma experts, researchers, industry and other relevant international stakeholders in an outcome-oriented way.
• Sarcoma patients need timely and accurate diagnosis and need to be treated according to guidelines – ideally as early as possible in multidisciplinary sarcoma expert centres. SPAEN advocates and supports the implementation of these structures and pan-European collaboration between these centres.
• Clinical research, studies and generating data are essential parts of the process of developing better and innovative treatment solutions. SPAEN aims to be involved as early as possible in clinical trials, to try to improve patient’s access to studies and to support meaningful research – following the specific needs of rare cancer patients.
• Sarcoma patients and their relatives need a strong “United Sarcoma Patient Voice” and strong “National Patient Support Opportunities”. That’s why SPAEN cares for their members – the existing national patient organisations and encourages the creation of new ones.

“Together we can make a difference for those affected by sarcomas!”

Members:

• Markus Wartenberg, SPAEN/German Sarcoma Foundation and Partner Leader
• Bernd Kasper, SPAEN/German Sarcoma Foundation and Medical Oncologist
• Olga de la Llana , SPAEN/AEAS Spain
• Natalia Fernandez, SPAEN/AEAS Spain
• Michaela Geissler, Project Management and Administration
• Kathrin Schuster, Communications and Project Management

Established in Avda. Reyes Católicos, 2. Madrid 2804 (Spain). VAT number: ESG85874949

Instituto de Investigación Sanitaria Fundación Jiménez Díaz (IIS-FJD) is a non-profit foundation constituted by Fundación Jimenez Díaz University Hospital (FJD) and Universidad Autónoma de Madrid (UAM) in 2009. It has a well-established record of commitment to research and teaching in addition to its clinical, care-related activity. These three pillars guide the work carried out in the IIS-FJD, whose goal it is to foster excellence in research, scientific and technological understanding, teaching, and training in the hospital. The scientific structure of IIS-FJD includes 28 research groups, and they focus their activities in six strategic areas. Safeguarding the quality, ethics and ethical principles of research are cornerstones of the work IIS-FJD performs every day. IIS-FJD participates in several national and international network as ECRIN –The European Clinical Research Infrastructure Network for Clinical Trials and Biotherapy, EATRIS– The European Advanced Translational Research Infrastructure in Medicine and BBMRI –Biobanking and Biomolecular Resources Research Infrastructure. Since 2009, other institutions have joined our Health Research Institute, among them, 3 other University Hospitals in the region of Madrid have been incorporated to the institution (Hospital Infanta Elena de Valdemoro, Hospital Rey Juan Carlos de Móstoles and Hospital De Villalba).

The Fundación Jiménez Díaz University Hospital (FJD) is one of the oldest hospitals in Spain. It has been a cornerstone in the history of medical and clinical research in the country, due to the implementation of pioneering medical procedures, being the first Hospital to perform heart surgery, to establish an ICU, etc. In addition, it is an institution committed to medical education, promoting the first postgraduate teaching programs (MIR) since 1960, and integrated in the Medicine Teaching Program of the Universidad Autónoma de Madrid since 1970.

Translational Oncology division bases its main research activity on Translational Oncology. Since the beginning of its activity at the IIS-FJD in 2012, it has incorporated relevant senior researchers with extensive experience in different fields of biomedical research. The strategy is aligned with the fusion of the background and trajectory of each senior researcher to undertake common objectives. As a result, the group has obtained notable achievements such as patents, research projects, more than 90 scientific articles, doctoral theses, etc. This environment, together with the collaboration of key departments such as Pathology and Surgery, and the support of South Texas Accelerated Research Therapeutics, makes the group a reference laboratory in Translational Oncology.

Members:

• Javier Martín-Broto, Consortium Coordinator
• Nadia Hindi Muñiz, Medical Oncologist
• David da Silva Moura, Scientific Manager
• Cristina Roldan Mogio, Financial and Administrative Manager
• Marta Martín-Ruiz, Project Manager and Postdoctoral Research