We’ve just launched the Resources section of the Chordoma Foundation website. This section currently contains a list of nation-wide support services relevant to chordoma patients, and in the future will be expanded to include local resources searchable by state, a physician directory, guides for patients and caregivers, and the latest news about clinical trials open to chordoma patients. It’s all coming soon so check back regularly!
Anyone dealing with chordoma knows how difficult it can be to navigate the medical system and get the support you need. Our goal is to make the process of dealing with chordoma as easy as possible and the resources section of our website is the first step in that direction. We want this to be a comprehensive one-stop information source for chordoma patients and their families.
To do this, however, we will need input from the chordoma community. There are three ways you can help:
- Send us links to resources that YOU found helpful. They can be national, in your community, or near a major medical center (i.e. Boston & Loma Linda).
- Tell us what you’ve learned from your experience, what worked for you and what didn’t, what you’d do differently if you could, what advice you would give others dealing with chordoma
- Volunteer to help us compile the wisdom of the chordoma community into guides or educational material
Your suggestions can be sent to firstname.lastname@example.org. We look forward to hearing from you!