Renpenning's Syndrome is a rare developmental disorder characterized by a regression in mental and physical development in early childhood.
Hi! I know, you two did converse in 2014 but I stumbled upon you just now. Perhaps you are still active in some sort of way. My son Lars, now 2,5 yrs was diagnoesed with Renpenning in april after almost one year of searching a cause for his slow development. I am the carrier. Due to the rareness it would be very nice to listen to other families. My email is email@example.com
Hi my son was diagnosed on 22nd July 2014. You're the first person I found after 6days attached to Google! Found u on Facebook :) check your 'other' messages.... I was so excited :) Finn is 5. I haven't told my family the diagnosis because it's complicated, don't want to give them something else to argue about and because it's so rare they could find something I'd written and I want to avoid that xx I started to set up some group/pages on fb, ont me so far and my hubby https://m.facebook.com/PQBP1RenpenningSyndromeXp11.23del?ref=bookmark
Hello my son was diagnosed with renpenning about a year ago, he is 2 now. We live in New Jersey. If you would like to email me, I would love to talk. My email is firstname.lastname@example.org
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.
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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.
My son who was born in June of 2012 was recently diagnosed with renpenning syndrome. Knowing how rare this syndrome is and not being able to find any other families to relate to...
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