Cookies help us deliver our services. By using our services, you agree to our use of cookies. Learn more

Renpenning's Syndrome

What is Renpenning's Syndrome?

Renpenning's Syndrome is a rare developmental disorder characterized by a regression in mental and physical development in early childhood.

 

Renpenning's Syndrome is a rare developmental disorder characterized by a regression in mental and physical development in early childhood.
Acknowledgement of Renpenning's Syndrome has not been added yet.
Prevalence Information of Renpenning's Syndrome has not been added yet.
Synonyms for Renpenning's Syndrome has not been added yet.
Cause of Renpenning's Syndrome has not been added yet.
Symptoms for Renpenning's Syndrome has not been added yet.
Diagnosis of Renpenning's Syndrome has not been added yet.
Diagnostic tests of Renpenning's Syndrome has not been added yet
Treatments of Renpenning's Syndrome has not been added yet.
Prognosis of Renpenning's Syndrome has not been added yet.
Tips or Suggestions of Renpenning's Syndrome has not been added yet.
References of Renpenning's Syndrome has not been added yet.
Hello "complicated" Created by Katie2806
Last updated 25 Jun 2018, 10:21 AM

Posted by kiki1112
25 Jun 2018, 10:18 AM

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 kiki1112@gmx.de

Posted by Complicated
4 Aug 2014, 08:23 AM

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

Posted by Katie2806
4 Aug 2014, 02:58 AM

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 katie.mccall.33@gmail.com

Community External News Link
Title Date Link
Community Resources
Title Description Date Link

Clinical Trials


Cords registry

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.

  1. Complete the screening form.
  2. Review the informed consent.
  3. Answer the permission and data sharing questions.

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.

Community Leaders

 

Expert Questions

Ask a question

Community User List

My son has just been diagno...
Hello, <p>&nbsp;</p> <p>&nb...

Start a Community


Don't See Your Condition On Rareshare?

Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.

FAQ


Have questions about rareshare?

Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.

Discussion Forum

Hello "complicated"

Created by Katie2806 | Last updated 25 Jun 2018, 10:21 AM


Communities

Our Communities

Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.

FIND YOUR COMMUNITY
Physicians

Our Resources

Our rare disease resources include e-books and podcasts

VIEW OUR EBOOKS

LISTEN TO OUR PODCASTS

VIEW OUR GUIDES

Leaders

Our Community Leaders

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.