Lateral Meningocele Syndrome is a rare disorder characterized by multiple lateral meningoceles (meninges protrude from a spinal opening).
Please help spread the word about our new page, Living with Lateral Meningocele Syndrome, specifically for Lateral Meningocele Syndrome. This syndrome is so rare there are less that 20 (as far as we can tell) diagnosed with this syndrome. We know what it is like to desperately search for a diagnosis and fight an almost unknown battle for our child. There are many people going undiagnosed for years or suffering alone in silence. If we could help just one person or family find what they are looking for, all the hard work out into this page will be worth it. Thank you and much love to you all! Here is a link to our page https://m.facebook.com/living.with.LMS/?ref=bookmarks
My daughter will be 3 in October and has lateral meningocele syndrome. The prognosis is good in general. I considered it a win compared to some if the other syndromes she could have had... Definitely Google Lateral Meningocele Syndrome. Here is a link to an article my daughter's neurosurgeon helped write about my daughter http://thejns.org/doi/abs/10.3171/2016.9.PEDS16311?journalCode=ped.1
We would love to hear from anyone who might have or know someone who has this very rare syndrome. As far as I know, there are less than 20 people in the world with it.
My 3 year old grandson has just been diagnosed with LMS. There is so little information. I can't find any prognosis or what to expect in the future.
Does anyone out there have this syndrome or know of someone who does.
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.
Proud mommy of a brave little girl with a very rare syndrome.
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Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.
Created by Vhare85 | Last updated 18 Aug 2017, 04:16 PM
Created by jennifer0905 | Last updated 17 Aug 2017, 05:11 AM
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