Non-medical participants
Non-medical participants
Various professionals come into contact with Neuronal Ceroid Lipofuscinoses. There are also non-medical healthcare professions that encounter NCL, such as orthoptists.
9th Health
Congress Hamburg
November 25th-26th 2011
On November 25th and 26th 2011, the NCL-Foundation
will have an information stand at the luxurious Radisson Blu in Hamburg at the 9th Health Congress. The
two-day conference, which has developed into a healthcare summit, will mainly
center around the theme of future healthcare.
In addition, the care of chronically ill patients will also be a theme. The NCL-Foundation will therefore be present to disseminate information about caregiving for the disease NCL (Neuronal Ceroid Lipofuscinoses) as well as talk about the essential work of the Foundation.
Our heartfelt thanks goes to Springer Medicine, who provided a free stand
at the Foundation’s disposal. For more information about the Congress, please
click here.
“Have you ever “overlooked” Neuronal Ceroid Lipofuscinosis?”
This is the title of the article by Dr. Frank Stehr, which was recently published in the journal of the Professional Association of Orthoptists, “orthoptik-pleoptik 32/2009.” This article is targeted at sight-testing schools as well as ophthalmologists and focuses on the problem of misdiagnosis in connection with the disease NCL. Often children with juvenile NCL are initially overlooked.
You will find the article here (~538 KB).
(Published in the journal of the German Professional Association of Orthoptists (Orthoptistinnen Deutschlands e.V.) "orthoptik-pleoptik 32/2009”, ISBN 978-3-9808399-6-9.)
We thank the editors and the professional association for their successful cooperation. Otherwise, orthoptic departments are found in eye hospitals, rehabilitation clinics, and early support centres for the visually impaired, as well as in many ophthalmology practices. These are colloquially described as sight-testing schools.
On invitation, Dr. Stehr held a lecture on NCL and the work of the Foundation, both in Oslo (Scandinavian Orthoptic Association, 16.-18.9.09) and in Hildesheim (BOD-Regional Congress Niedersachen, 19.9.09).
