Plasminogen Deficiency is a rare blood disorder related to blood clots that typically only causes eye problems.
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It is my granddaughter, and she is 14 months old. We are trying to learn all we can as well. There is a group on Facebook-put Plasminogen Deficiency in the search and it will pop up. It has about 800 members but there are two women who are very knowledgeable (for as much info as it out there!) and they are great because they both have children with the condition.
I would love to talk with you I also have a young daughter, she's 4 now but was diagnosed with the the same condition when she was 1 year old. I have been searching for someone to talk with.
My granddaughter has just been diagosed with plasminogen deficiency and is recovering from a very severe eye infection after spending a week in the hospital. I am concerned and worried and don't know much about this condition. Any advice would be much appreciated.
There are only a handful of children with this condition. My daughter is the only one we've been able to locate in the US. Info is very hard to come by fortunately the is a doctor at the Cincinnati Childrens Hospital in Ohio who is from Europe and had seen this condition before and was able to diagnose my daughter but only a handful of physicians have ever seen a case of PD. We have learned alot over the last 3 years most of it we've had to research ourselves and we've never found another patient who's parents we could talke with. my email is email@example.com we can talk anytime you want
hi there my duaghter has just been diagnosed to and we havent been told much info either it wud be grate if we could chat as this is very hard to find people with the same illness plzzz reply 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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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.
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