Doctor Directory
Chordoma should be treated by doctors who have substantial experience with this disease. Because chordoma is so rare, many chordoma patients find it necessary to travel to get the best care possible from doctors who have the most experience with chordoma. Our Doctor Directory can help you find these experienced doctors. Chordoma patients are strongly encouraged to get multiple opinions to help them make the most informed treatment decisions.
If you have had a good experience with your doctor, but they are not listed on the Doctor Directory, please let us know.
Chordoma care across Europe
Chordoma care varies across European countries. Alongside our Doctor Directory, there are European Reference Networks and national sarcoma networks available to support patients.
European Reference Networks
European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe. They aim to address complex or rare diseases and conditions that require highly specialized treatment and concentrated knowledge and resources. Launched by the European Commission in 2017, ERNs are an important step towards ensuring that patients with rare diseases receive the best possible care, regardless of where they live in the EU. There are two ERNs of interest to chordoma patients. Healthcare providers who are members of ERNs are connected through a dedicated IT platform and, using a variety of telemedicine tools, offer access to expertise and knowledge of multidisciplinary teams, enabling patients to receive the best advice for treatment and diagnosis.
- EURACAN is the ERN for all rare adult solid cancers. Chordoma falls under the domain Rare cancer of connective tissue. EURACAN brings together experts and specialized centers across Europe to enhance the diagnosis, treatment, and follow-up care for adults with rare cancers like chordoma.
- ERN PaedCan aims to improve the diagnosis, treatment and care of children and young adults with rare cancers across Europe. It brings together leading experts and centers specializing in pediatric oncology, enabling them to share knowledge, expertise, and best practices. This network helps ensure that young patients, wherever they live in the EU, have access to high quality care and cutting-edge treatments. By fostering collaboration and research, ERN PaedCan also works to develop new therapies and improve outcomes for children and young adults with rare cancers.
National sarcoma networks
National sarcoma networks exist in several European countries, aiming to coordinate and improve the care for patients with sarcomas, including chordoma. When contacting these centers, please ask about their experience in treating chordoma specifically. Because chordoma is such a complex disease to treat, we have developed lists of questions to ask your doctor. You may not need to ask all the questions on these lists, and you may want to ask questions not listed, but these will help you get started.
France: NetSarc connects a group of expert centers across France focused on providing coordinated, multidisciplinary care for sarcoma patients. Their goal is to ensure that patients receive consistent, high-quality care no matter where they are in France.
Germany: The German Cancer Society (Deutsche Krebsgesellschaft, DKG) has certified several specialized sarcoma centers across Germany. These centers are recognized for their expertise in the diagnosis, treatment, and care of patients with sarcomas, including chordoma.
Italy: The Italian Sarcoma Group provides an overview of reference centers for the treatment of sarcomas throughout Italy. These centers are recognized for their expertise in the diagnosis and treatment of sarcomas, including rare types such as chordoma.
Netherlands: The Dutch Sarcoma Group provides an overview of reference centers for the treatment of sarcoma in the Netherlands. These centers are specialized in the diagnosis and treatment of sarcomas, offering expert care and access to the latest treatment options. You can filter for bone sarcomas and find a center specialized in treating chordoma.
Spain: The Spanish Group for Research on Sarcomas (GEIS) provides an overview of reference centers for the treatment of sarcoma across Spain. The GEIS network includes hospitals and research institutions that collaborate on clinical trials and the latest treatment protocols, offering patients access to cutting-edge therapies.
Sweden: The Regional Cancer Centers – Sarcoma is a national network that connects specialized centers across the country to provide coordinated care for patients with sarcoma.
Switzerland: The Swiss Sarcoma Network connects various specialized centers across the country. The network ensures that patients with sarcoma receive expert care and access to the latest treatment options, including participation in research and clinical trials. Patients are encouraged to contact the Luzerner Kantonsspital first.
United Kingdom: The London Sarcoma Service is one of the largest and most specialized centers for sarcoma treatment in the UK. In addition, several other specialized sarcoma centers across the UK are recognized for their expertise in treating chordomas.
