Chordoma Foundation


 

Our story

The Chordoma Foundation is a nonprofit organization working to improve the lives of those affected by chordoma and lead the search for a cure.  We envision a future in which everyone affected by chordoma is able to overcome the disease and maintain their quality of life.

 

Our Approach

With tens of billions of dollars spent on cancer research every year, a small foundation like ours cannot hope to have the impact we aspire to by conducting business as usual. That’s why we’re re-engineering the way research is done, to make the process faster and more efficient through:

·      Shared resources: Such as tumor tissue, cell lines, and mouse models that we make available to hundreds of researchers worldwide at no cost

·      Parallel processing: Of chordoma and other types of cancer in large-scale research projects

·      Focused investments: In projects identified as top priorities by the research community

·      Incentives: That drive investment in chordoma research by scientists (e.g., prizes) and companies (e.g., viable path to orphan drug status)

·      Economies of Scale: That centralize commonly performed experiments to eliminate redundant investments and reduce time and costs

·      Collaboration: Between doctors, scientists, and companies with complementary interest, capabilities, and resources to carry out projects that none could do alone

 

Our Results

Over the past ten years, the Foundation has grown into the leading funder of chordoma research, an efficient catalyst for chordoma drug development, and a dependable source of information and support for thousands of patients and their loved ones across the world.  Despite long odds, the support, involvement, and generosity of our many friends and partners has fueled progress that is virtually unprecedented for a rare cancer, and helped fundamentally change what once was a lonely and bewildering journey for many chordoma patients. Together we have leveled the playing field for chordoma by:

·         Eliminating many of the obstacles that once stood in the way of research – such as lack of tissue, disease models, coordination among researchers

·         Engaging hundreds of scientists worldwide to bring their expertise to bear on behalf of chordoma

·         Applying powerful new technologies – like CRISPR, single-cell sequencing, and DNA-encoded chemical libraries – to the discovery of therapies that exploit chordoma’s unique vulnerabilities

·         Accelerating the pace at which therapies developed for other cancers can be tested in the lab and brought to clinical trials for chordoma patients

·         Initiating seven new chordoma-specific clinical trials, with a goal of 10 by 2020

 

Expert Answers Series

 

Patient Navigation Service 

 

The Chordoma Foundation serves as a resource for chordoma patients and families around the world, at any stage of their journey with chordoma. Our free and confidential Patient Navigation Service helps individuals facing chordoma overcome barriers to getting the best care possible – whether it’s finding the right doctors, understanding treatment options, or getting emotional support, Chordoma Foundation Patient Navigators are here to assist you.

Our Patient Navigators can:

·      Answer questions about chordoma

·      Provide information on treatment guidelines, experienced physicians, and treatment centers

·      Identify and provide information on clinical trials open to chordoma patients

·      Give referrals to programs and organizations that offer travel and lodging assistance, 

co-pay relief, and other benefits

·      Support requests and appeals to insurance companies

·      Connect chordoma patients and caregivers with others in the chordoma community

 

Community Conferences

Chordoma Community Conferences are a time for patients and their loved ones to come together to learn about the latest advances in chordoma research and treatment, connect with one another, and take action to achieve our shared vision for a better future for those affected by chordoma. Community conferences provide unique opportunities to hear directly from leading chordoma doctors and researchers, and to meet a community of peers who share similar experiences. Our hope is that participants come away more informed, connected with a supportive community, and empowered to take on life with chordoma. 

2019 Chordoma Community Conference at Northwestern Medicine

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