Neuroblastoma is a rare form of extracranial solid cancer found in children.
My name is Mariah and I am a 30-year-old neuroblastoma survivor. At the age of 1, I was diagnosed, and I had a tumor wrapped around my spine and aorta. At the time, there was nothing that could be done for me, so my parents agreed to let me be an experimental patient at Mayo Clinic in Rochester, Minnesota. The cancer was cured after many years of chemotherapy, radiation, and surgeries!!! Even though I am cured, I have had a lifetime of secondary medical effects from the treatments. I have had a wide array of issues that have popped up, and I continue to battle them. Currently, I am disabled because of back issues (because of the location of the tumor, I had scoliosis, which led to back braces and multiple surgeries) and chronic pain, as well as some other issues. Although I do have these other issues, I am very thankful to be alive! I did go to college and graduate schools - I have a bachelor's degree in political science and a master's degree in business administration. I did, however, study biology and chemistry for a few years, so coupled with my 29 years of medical experience, I can maybe offer some layperson help with any medical issues that you might have. Since I am unable to work, I would LOVE to be able to help any of you with trying to understand medical questions...I also am a very good listener (my friends all come to me for help and advice) and would love to hear your stories, as well as offer some support...And, I would love to be able to offer you hope that things can work out and this cancer can be cured!!
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
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Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.