Contact Us FAQ’s
1. How can I get a referral by a CERN member?
CERN routinely connects patients and families with institutions and physicians that specialize in treating ependymoma. You can contact the CERN medical facility directly or fill out our referral form and we will be happy to connect you.
2. How can I get a second opinion by a CERN member?
Seeking a second opinion is always a good option when dealing with rare diseases. We offer complimentary physician to physician consultations with a CERN member. Please have your treating physician contact us.
3. Where can I find out more information about ependymoma?
The CERN Foundation is the only organization devoted solely to ependymoma. Our website includes information for patients and caregivers about treatment, diagnosis, clinical trials, symptom management and recurrence. It is a valuable resource for those affected by ependymoma, including patient stories. You can also sign up for e-news, follow us on Twitter and Facebook.
We have also created a guide as a resource for patients, caregivers and advocates. To view or download a free copy of the Ependymoma Guide, click here.
4. How do I contact the CERN Foundation?
5. General Inquiries such as the following: What is my prognosis? Will my ependymoma recur? Is my current treatment regimen the best or most appropriate for my diagnosis?
Unfortunately, the CERN Foundation medical providers are not able to answer questions such as the ones listed above via e-mail, telephone or other written communication. However, if a patient is able to travel to one of the CERN Foundation affiliated medical institutions, our team may be able to offer insight into many of these questions and/or help to provide new treatment options.
6. Is ependymoma cancer?
All grades of ependymoma tumors are considered cancer. Like other primary brain and spinal cord tumors, these cancers are different in that they tend not to spread to other parts of the body, but can recur and require treatment. As with other cancers – some can be cured but others cannot. You can find out more about the characteristics of each type by reviewing our Pathology section of our website.
7. Do you know of any risk factors that would cause me to develop an ependymoma?
We do not have any specific known risk factors. A risk factor is an attribute, characteristic or exposure of an individual that increases the likelihood of developing a disease. CERN has expanded the work of our successful Ependymoma Outcomes Surveys to include the evaluation of potential risk factors for the occurrence of ependymoma as well as the evaluation of potential genomic changes that may lead to the development and progression of ependymoma.
8. Are there any possible hereditary or genetic links to ependymomas?
Ependymoma tumors with a hereditary link are generally in families with ependymomas or other specific cancers in multiple family members. If you or the patient is concerned about a potential hereditary link, you may want to pursue consultation at one of the CERN Foundation medical institutions or elsewhere where they have expertise in research and treatment of ependymomas. We would also suggest an evaluation by a cancer genetics group.
9. What clinical trials are available for adult and pediatric ependymomas?
It is best to discuss clinical trials as an option with your doctor and what trials may be available. You can find trials by visiting our ependymoma clinical trial page.
10. How can I participate in a clinical trial sponsored by the CERN Foundation?
While we want to help each and every patient find the best treatment option for ependymomas, we are not able to accept or deny patients for any clinical trials via website or telephone inquiries. If you are interested in joining a CERN supported clinical trial, contact us and we will be happy to direct you to the appropriate CERN medical facility for further evaluation.
11. Where can I find research articles regarding the treatment, cause and prognosis of ependymomas?
We suggest that you either visit the News and Research area of the CERN Foundation website, which we update as we learn of new research OR access articles through PubMed. PubMed is the most up-to-date resource for published research. Please note: there is traditionally a 6-8 month lag time between the research submission and publication.
12. How do I make a donation to the CERN Foundation?
The CERN Foundation is a 501c3 nonprofit organization. Checks can be made payable to the CERN Foundation and sent attention to: CERN Foundation, PO Box 217, Zionsville, IN 46077.
Please also include your name, address, and telephone/e-mail address so that we may send you a receipt of your donation for tax purposes and express our gratitude. Please make notation of in honor or memory of your loved one and include their address so they will recieve an acknowledgement. You can also donate or fundraise online.
13. How else can I get involved and bettering the quality of life in patients with ependymoma?
We are currently running a research project called the Ependymoma Outcomes Survey that addresses and seeks to improve quality of life issues in adult and pediatric patients with ependymomas. If you would like to be a part of this very important effort, please click here.
14. How can I share my story on the CERN Foundation’s website?
We love to receive stories of hope and inspiration. If you would like to share your experience or that of a loved one, please e-mail us your name, photo and story (you can certainly share your story anonymously, too).
15. How can I donate my remains to research specifically related to ependymoma?
Often times a patient may request to donate their remains to their treating medical facility and/or treating medical provider. This can be done by requesting that your treating medical provider order an autopsy. Additionally, there are research organizations that offer this service.
16. Are there any new treatments available?
Treatment approaches and options vary based on the individual, prior treatment, and other health issues. Having a discussion with your neuro-oncologist is recommended. Check our website, newsletters and social media pages, where we update regularly with the latest news and research information.
17. Where can I find a support group?
- American Brain Tumor Association has nationwide listing of brain tumor support groups.
- Adult Ependymoma Online Support Group is comprised of survivors, caregivers, family members, friends or anyone else with an interest in ependymoma.
- Ependyparents is a list of parents of ependymoma patients, survivors and angels of brain tumors.
- Myxopapillary Ependymoma Group is a group for patients, parents, grandparents and patient advocates to share treatment information and ideas for children and adults who have myxopapillary ependymoma.
- Pediatric Ependymoma Parents Group is a group for parents and/or primary caregivers of a child that was originally diagnosed with ependymoma under the age of 18.
- Spinal Cord Tumor Association is a caring community on the web, established by survivors, who have been given the overwhelming diagnosis of a spinal cord tumor.
You can find more support by visiting our Resources section on our website.
If we did not answer your question, contact us and we would be happy to help you.