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Chordoma Foundation Sign Up Information

Last Updated:

11/21/2019

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Membership Emails

Below is a sample of the emails you can expect to receive when signed up to Chordoma Foundation.

Chordoma Foundation Peer Conne...
Confirmation: Peer Connect app...

Hi Alexander,�

Thank you for contacting the Chordoma Foundation. My name is Chase, and I am a Patient Navigator at the Foundation. I'm glad you reached out to us about our Peer Connect Program for support. So I can accurately match you to the best Peer Guide for your situation, can you please answer the questions below:�

What is your relationship to chordoma?

Where is or was your or your loved one's primary tumor located?

Where do you or your loved one live?�

Once I hear back from you I will reach out to the appropriate Peer Guide to see if they are able to match with you at this time.�

If there is anything else I can do to help, please let me know.�

All the best,�

Chase�

Chase Hinnant
Patient Navigator�
Chordoma Foundation�

Patient Navigation Service:�(888) 502-6109�
chase@chordoma.org

Improving the lives of those affected by chordoma. Leading the search for a cure.�

These disclaimers apply to the original message, any attachments, and all subsequent messages or attachments sent by or on behalf of the Chordoma Foundation.�If you are not the intended recipient for this email, please do not read, copy, or distribute it. Instead, notify the sender as soon as possible and then delete it.

Your use or provision of information provided by or to the Chordoma Foundation in any medium does not create a physician-patient relationship with the Chordoma Foundation. The Chordoma Foundation does not provide you with �covered health services� as defined by HIPAA. Any information you provide to the Chordoma Foundation is voluntary, and will not be �protected health information� and the Chordoma Foundation is not obligated to handle that information in a manner required by HIPAA. Nothing in this message constitutes an offer, warranty, or representation from the Chordoma Foundation or its affiliates, nor does it create a physician-patient relationship. Any reliance you place or action you take on information in or attached to this email is entirely at your own risk.

Correspondence from the Chordoma Foundation is not intended to, and does not, provide medical advice, professional diagnosis, opinion, treatment, or services. Medical information provided by the Chordoma Foundation in any medium is for informational and educational purposes only. After reading content from the Chordoma Foundation, review the information carefully with your physician. Information from the Chordoma Foundation is not a substitute for consultations with qualified health care professionals who are familiar with your medical conditions and needs. The Chordoma Foundation strongly recommends that care and treatment decisions be made in consultation with a physician or other qualified health care professionals who are familiar with your specific health situation.

Raw Data Registration Structure Registration Form Text

Registration

Province

First name

Last name

Name (full)

Phone (home)

Phone (mobile)

Phone

Home address

City

State

Region

Country

Postcode

Gender

Country

Please select...

State

Please select...

Province

Please select...

Preferred phone number

Please select...

What is the preferred method to contact you?

Phone

Please select...

Please select... Yes No How old are your children? (Please select all that apply)

Preschool

School-aged

Young adult

Please select...

How did you learn about the Foundation and our Peer Connect Program?

Family member

Friend or colleague

Healthcare professional

Online search

Another organization's website

Facebook

Twitter

News story

Chordoma Foundation brochure or literature

Conference or meeting

Scientific journal article

Please select...

Please select... Chordoma patient Spouse of patient Parent of patient Family of patient Friend of patient About your chordoma journey Where is or was your primary tumor located?

Skull baseThe bones at the bottom part of the skull that separate the brain from other structures. The clivus is one of the bones of the skull base. (clivalThe surface of a portion of bone at the base of the skull. It is surrounded by the brainstem and both carotid arteries. Chordomas that form in this area are called clival chordomas.)

CervicalThe seven vertebrae that make up the neck. These vertebrae are commonly referred to as C1-C7.

ThoracicThe twelve vertebrae of the upper and mid back, extending from the shoulders to the bottom of the rib cage. These bones are commonly referred to as T1-T12.

LumbarThe five vertebrae of the lower back, commonly referred to as L1-L5.

Sacral/coccygeal

More than one location Which of the following best describes your chordoma:

I have or had a local primary tumor, but no recurrenceTumor that has grown back after initial treatment. Recurrences can be isolated or multifocal, local or regional. and no metastasisWhen tumors have spread to other parts of the body from the original tumor site.

My primary tumor has been treated and has recurred again in the same area

My tumor has spread to other locations on the spine or other parts of the body, but can still be treated with surgery or radiation

Please select...

Please select... Yes No Treatments received: (Please select all that apply)

Surgery

Radiation

Drug therapyThe use of treatments like targeted therapies to kill cancer cells.

Clinical trialResearch studies involving human subjects that are done to test whether a treatment is safe, and how well it will work to treat a specific disease. Right now are you:

Preparing for treatment

In active treatment

Monitoring Complementary therapies: (Please select all that apply)

Herbs

Supplements

Diet

Body work (e.g., massage, reiki, healing touch)

Meditation

Psychotherapy

Support groups

Faith-based support

Acupuncture

Hypnosis

Please select...

Please select... 0-17 18-24 25-44 45-64 65+ Where is or was the patient's primary tumor located?

Skull base (clival)

Cervical

Thoracic

Lumbar

Sacral/coccygeal

More than one location

Don't know Which of the following best describes your loved one's chordoma?

Patient has or had a local primary tumor, but no recurrence and no metastasis (tumor in other places)

The patient's primary tumor has been treated and has recurred in the same area

The patient's tumor has spread to other locations on the spine or other parts of the body, but can still be treated with surgery or radiation

Patient's tumor(s) can no longer be treated with surgery or radiation Do you know approximately when the patient was diagnosed?

Yes

Please select...

Please select... Yes No Treatments received: (Please select all that apply)

Surgery

Radiation

Drug therapy

Clinical trial Right now are you:

Preparing for treatment

In active treatment

Monitoring Complementary therapies: (Please select all that apply)

Herbs

Supplements

Diet

Body work (e.g., massage, reiki, healing touch)

Meditation

Psychotherapy

Support groups

Faith-based support

Acupuncture

Hypnosis

Enter initials here I agree that I have provided the information in this form for the purpose of being connected with a chordoma patient or caregiver through the Chordoma Foundation Peer Connect program. I consent to being contacted by a Chordoma Foundation Patient Navigator and a Chordoma Foundation Peer Guide.

I agree and consent. The Chordoma Foundation values your privacy and will not sell or share your information with any other organizations. Would you like us to contact you with relevant updates including our e-newsletter, progress updates, the latest research and treatment advances, educational resources and events, and opportunities to get involved?

Yes

No Policy acceptance

Data Name	Data Type	Options
Province	Text Box
First name	Text Box
Last name	Text Box
Name (full)	Text Box
Email	Text Box
Phone (home)	Text Box
Phone (mobile)	Text Box
Phone	Text Box
Home address	Text Box
City	Text Box
State	Text Box
Region	Text Box
Country	Text Box
Postcode	Text Box
Gender	Text Box
Country	dropdown	Please select...
State	dropdown	Please select...
Province	dropdown	Please select...
Preferred phone number	dropdown	Please select...
	option	What is the preferred method to contact you?
	option	Phone
	option	Email
	dropdown	Please select...
	dropdown	Please select...
	dropdown	Please select...
	dropdown	Please select...
	checklist	Please select... Yes No How old are your children? (Please select all that apply)
	checklist	Preschool
	checklist	School-aged
	checklist	Young adult
	dropdown	Please select...
	option	How did you learn about the Foundation and our Peer Connect Program?
	option	Family member
	option	Friend or colleague
	option	Healthcare professional
	option	Online search
	option	Another organization's website
	option	Facebook
	option	Twitter
	option	News story
	option	Chordoma Foundation brochure or literature
	option	Conference or meeting
	option	Scientific journal article
	dropdown	Please select...
	option	Please select... Chordoma patient Spouse of patient Parent of patient Family of patient Friend of patient About your chordoma journey Where is or was your primary tumor located?
	option	Skull baseThe bones at the bottom part of the skull that separate the brain from other structures. The clivus is one of the bones of the skull base. (clivalThe surface of a portion of bone at the base of the skull. It is surrounded by the brainstem and both carotid arteries. Chordomas that form in this area are called clival chordomas.)
	option	CervicalThe seven vertebrae that make up the neck. These vertebrae are commonly referred to as C1-C7.
	option	ThoracicThe twelve vertebrae of the upper and mid back, extending from the shoulders to the bottom of the rib cage. These bones are commonly referred to as T1-T12.
	option	LumbarThe five vertebrae of the lower back, commonly referred to as L1-L5.
	option	Sacral/coccygeal
	option	More than one location Which of the following best describes your chordoma:
	option	I have or had a local primary tumor, but no recurrenceTumor that has grown back after initial treatment. Recurrences can be isolated or multifocal, local or regional. and no metastasisWhen tumors have spread to other parts of the body from the original tumor site.
	option	My primary tumor has been treated and has recurred again in the same area
	option	My tumor has spread to other locations on the spine or other parts of the body, but can still be treated with surgery or radiation
	dropdown	Please select...
	checklist	Please select... Yes No Treatments received: (Please select all that apply)
	checklist	Surgery
	checklist	Radiation
	checklist	Drug therapyThe use of treatments like targeted therapies to kill cancer cells.
	option	Clinical trialResearch studies involving human subjects that are done to test whether a treatment is safe, and how well it will work to treat a specific disease. Right now are you:
	option	Preparing for treatment
	option	In active treatment
	checklist	Monitoring Complementary therapies: (Please select all that apply)
	checklist	Herbs
	checklist	Supplements
	checklist	Diet
	checklist	Body work (e.g., massage, reiki, healing touch)
	checklist	Meditation
	checklist	Psychotherapy
	checklist	Support groups
	checklist	Faith-based support
	checklist	Acupuncture
	checklist	Hypnosis
	dropdown	Please select...
	option	Please select... 0-17 18-24 25-44 45-64 65+ Where is or was the patient's primary tumor located?
	option	Skull base (clival)
	option	Cervical
	option	Thoracic
	option	Lumbar
	option	Sacral/coccygeal
	option	More than one location
	option	Don't know Which of the following best describes your loved one's chordoma?
	option	Patient has or had a local primary tumor, but no recurrence and no metastasis (tumor in other places)
	option	The patient's primary tumor has been treated and has recurred in the same area
	option	The patient's tumor has spread to other locations on the spine or other parts of the body, but can still be treated with surgery or radiation
	option	Patient's tumor(s) can no longer be treated with surgery or radiation Do you know approximately when the patient was diagnosed?
	option	Yes
	dropdown	Please select...
	checklist	Please select... Yes No Treatments received: (Please select all that apply)
	checklist	Surgery
	checklist	Radiation
	checklist	Drug therapy
	option	Clinical trial Right now are you:
	option	Preparing for treatment
	option	In active treatment
	checklist	Monitoring Complementary therapies: (Please select all that apply)
	checklist	Herbs
	checklist	Supplements
	checklist	Diet
	checklist	Body work (e.g., massage, reiki, healing touch)
	checklist	Meditation
	checklist	Psychotherapy
	checklist	Support groups
	checklist	Faith-based support
	checklist	Acupuncture
	checklist	Hypnosis
	checklist	Enter initials here I agree that I have provided the information in this form for the purpose of being connected with a chordoma patient or caregiver through the Chordoma Foundation Peer Connect program. I consent to being contacted by a Chordoma Foundation Patient Navigator and a Chordoma Foundation Peer Guide.
	option	I agree and consent. The Chordoma Foundation values your privacy and will not sell or share your information with any other organizations. Would you like us to contact you with relevant updates including our e-newsletter, progress updates, the latest research and treatment advances, educational resources and events, and opportunities to get involved?
	option	Yes
	checklist	No Policy acceptance