Biotinidase deficiency is a genetic disorder in which the body is not able to process biotin properly.
Since you are here that mean one of your family member got this disorder.. It is bad, i know...! But, still it could be worth, comparing with all other disorders this one is not that much bad, it can be controlled and managed by small pill (biotin) everyday and you will be fine. Usually, you will go through a denial period at the beginning where we refuse to believe that this happen to us and then we go through some depression till we accept that this is reality and we have to live with it. anyway, try to be strong and understand that if you really take it seriously it can be managed and the patient can live normal life with God Blessing Wish you all the best
Hi, After spending some time I have found one website which is active about Biotin Deficiency and it has many memebers and they all are active with sharing many of their personall stories and consultants in the field, i thought to share it with you guys maybe someone will benefit http://biotinidasedeficiency.20m.com/
Hi Guys for Biotin 5 or 10 Ml I have found two good providers maybe this will be useful: http://www.amazon.com/Mericon-Meribin-Biotin-Supplement-OTC/dp/B000MK2VOQ/ http://www.freedavitamins.com/index.php?p=catalog&mode=search&search_in=name&search_str=biotin&x=90&y=5
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.
A dad of one son who got this disorder
trying my level best to provide whatever can make my kid a normal life
More than happy to share and help, been helped with others
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