Axenfeld-Rieger Syndrome is a rare disorder of the eyes and teeth.
My 16 year old son was diagnosed when he was 13 with the Rieger anomaly. He gets his pressure checked every 6 months and has a visual field test annually. He sees his ophthalmologist annually. So far he doesn't have Glaucoma. And, thankfully, no other signs or symptoms somfar. Glad to have founf this group today as nobody seems to know anything about Axenfeld-Rieger.
Hi Eviejo2004! It's extremely difficult to find individuals. I am from the US in the state of Florida. Would love to hear from your experiences here's my email firstname.lastname@example.org My 6 year old daughter doesn't have her front teeth either. She's been losing her lower baby teeth. Doctors have told us that her top front teeth just aren't present. She's doing well at school she's currently in the 1st grade and still gets checked out by her cardiologist and ophthalmologist.
Hi guys!!! Finally I've found a site for Reigers. My 8 year old daughter was diagnosed with the syndrome at 6 weeks old. She doing ok. No front teeth and the some of her adult teeth are a bit "peggy". She wears glasses and has regular pressure checks. We have just been referred for heart scans, ECGs etc to see of there's any underlying heart probs, but fingers crossed, none as yet. She's struggling a little at school with her reading n writing but her memory n knowledge are second to none!!! I'd love to hear more from you all as in the UK there's nothing for us parents of children with Reigers. Hope to hear from you soon xxxx
My daughter has been clinically diagnosed with this syndrome. She has all the characteristic mentioned. She will be turning 3 in a few days & she's missing her 4 front teeth & was born with ompholocele which required surgery when she was born. I would really appreciate any input on families that are or know anyone that experienced the samething. Thanks
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.
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