Patient stories are an important part of taking control of your treatment options. The experience of former patients can illuminate a difficult treatment process and help new patients understand what they are facing.
In the flurry of contradicting information, another patient's first hand experience can be crucial to navigating through the treatment process.
We are currently collecting patient stories and will continue adding them here. Please check back with us to see what new information has been added.
Read the story of Chordoma survivor Laurie Prince.
We encourage patients to write about their experiences and share them with others. If you would like to share your story, please contact us at patientstories@neurosource.org.
We believe that providing open, accurate and honest information will enable our patients to access the best treatment, be comfortable in the decision-making process and have realistic recovery goals that they can achieve.
We are committed to creating and producing information materials that answers specific questions for patients and provides clear, accurate information that patients can use.
We are currently in the process of developing these materials and will make them available to patients in the coming weeks and months. Please check back with us soon.
We are currently producing our first quarterly newsletter, which will include patient stories, research news, information on procedures and treatments and news about other support and advocacy organizations working with us on behalf of patients.
The newsletter will be available April 1st. Register with us and you will receive the newsletter automatically. We will make it available here on our site.
If you are interested in contributing to our newsletter, please e-mail us at newsletter@neurosource.org
We offer $1000.00 stipends annually to selected patient organizations that demonstrate excellent services for patients with diseases of the head, neck, brain, spine and facial disfigurement. The funds are designed to help small, active and vital groups, who are intimately connected to our patients provide more services for their patient base.
See below for more about the Patient Group Partnership Program, requirements for candidates and an application.
The INF offers patient groups the opportunity to apply for a partnership with us. For groups selected, we allocate $1000.00 stipends each year to patient organizations that demonstrate excellent services for patients with head, neck, brain or spine diseases and injuries, as well as, patients with facial disfigurement.
- Fill out the attached application or call 212.665.3122 to receive an application
- Provide a statement of need, not to exceed two pages. Please describe:
- The specifics of your organization
- The kind of patients you serve
- The problem or issue that you are meeting on behalf of your patient base
- What you will need to meet the needs of your patients
- How the INF will be involved in helping you meet your goals
- We have several requirements for candidates. Your organization:
- Must serve head, neck, brain or spine patients and be run by current or former patients
- Must demonstrate an up-to-date and active membership base
- Must be willing to partner with the INF on at least one patient event annually
- Must provide a follow-up report that demonstrates how the money was utilized in order to be eligible for a stipend the following year.
We believe that arming patients with news, information and research will enable them to be more proactive in their care. Information helps patients ask the right questions when they visit their doctor and feel more in control of what can sometimes be a terrifying process.
Click on the article below that is of interest to you. We will be adding more research consistently, so please check back with us.
