Netherlands: Chordoma Foundation Europe

Organisation Profile

The Chordoma Foundation is a nonprofit organization dedicated to curing chordoma. Started in the USA in 2007, the Chordoma Foundation is still the only existing organization that unites and represents chordoma patients. Given the rarity of this disease, and the resultant need to leverage all available resources and partners – wherever they may be – we are seeking to grow our network of doctors, researchers and patients around the globe. This is particularly important for patients, since the rarity of this disease means that there are often no other patients in the nearby area.

Since 2011 we are reaching out to Europe in an effort to provide better information and opportunities to patients here. In 2012 we organized for the first time in Europe meetings dedicated to Chordoma, both for physicians and patients. This meetings formed the start of establishing a European network. To be better able to exploit the European system we also incorporated a European legal entity in 2012.

Chordoma is a rare, slow-growing, relentless bone cancer that occurs in the head and spine in people of all ages, predominantly on the skull base and sacrum. The incidence of chordoma is approximately 1 in a million. Chordoma is typically resistant to chemotherapy and normal radiation, and is prone to multiple recurrences. The average survival after diagnosis is 7 years; astatistic we are determined to improve.

Our mission is to improve the lives of chordoma patients by rapidly developing effective

treatments and ultimately a cure for this devastating disease. We lead a coordinated international research effort with researchers across the world to accelerate the development of a cure, while improving the diagnosis, treatment, and quality of life for people affected by chordoma. We serve as a bridge between patients, doctors, researchers, drug companies, government and funding agencies, representing the interests of those with chordoma, and instilling a sense of urgency in the treatment development process.

To help patients get the best care possible, the Foundation provides accurate information about treatment options and clinical trials, refers patients to experienced doctors, and matches patients with trained peer support mentors. Additionally, bi-annually we organize Chordoma Community Conferences, both in the US and Europe. More information can be found on http://www.chordoma.org