last updated 17 April 2010
MEDICAL WEBSITE EDITOR
We are happy to announce that Dr. J. Oliver Semler has accepted the responsibility of OIFE’s medical website editor.
As such he will supervise the medical information that is published on the website and he will also seek to improve it.
Dr. Semler got his medical training at the Universities of Cologne and Freiburg both in Germany. In May 2001 he passed his
final clinical exams. In November 2001 he completed his M.D. thesis and in June 2008 he was certified as paediatrician.
Since then he works at the Children’s Hospital of the University of Cologne (Kerpenerstr. 62, 50924 Cologne, Germany,
Phone; +49-221-478-4361, Fax: +49-221-4783479).
He can also be reached via e-mail: meded@oife.org
Many OI people and colleagues in Europe will know Dr. Semler, as he has been active in the German OI society for
quite some time and has presided the “OI in Motion“ conference of the OIFE in 2009.
Besides his experience with treating OI people as a doctor, Oliver has OI himself. We expect that the latter fact will make it easier for him to
understand the needs of OI people.
We look forward to a gratifying and fruitful cooperation.
The new OI society of Colombia (see below) is organising its first OI seminar on 1,2, and 3 December 2010, here is their announcement in Spanish.
Estamos preparando el I (primer) Seminario sobre OI en Colombia. El
1,2,3 de Diciembre de 2010, esperamos tener en Tulua, Valle, al Dr.
Fassier y tres de sus colaboradores. Sera un evento conjunto y
paralelo con la UCEVA (Unidad Central del Valle), la universidad local
que tiene Facultad de Medicina y otros programas como Enfermeria,
Educacion Fisica, Idiomas... Ellos tienen un programa de atencion a
los Discapacitados, muy interesante, que lidera Luis Fernando Reyes
Cruz, con el Decano de Educacion Fisica Carlos Hernan Mendez Diaz.
Contamos con el aoyo total del Sr. rector Jairo Gutierrez. Hemos
decidido trabajar juntos por los pacientes con discapacidad y los de
OI porque aunando esfuerzos podremos ser mas productivos y podemos
aportar las distintas experiencias que tenemos en los temas que nos
ocupan. Le estamos enviando un correo al Dr. Fassier para poder
ultimar detalles y preparar ponencias, reuniones y demas. Estamos
supeditados al tiempo y programacion que tenga el equipo de Montreal
porque ellos tienen una agenda muy apretada todo el tiempo. Preparar
un evento de esta magnitud conlleva una logistica grande, hablar de
hoteles, transporte, conferencistas, asistentes, publicitar los
eventos, etc., por lo cual estamos desde ya trabajando en todo. La
UCEVA tendra conferencistas Espanoles especializados en Discapacidad.
Estaremsos trabajando juntos en costos, invitaciones, promocion,
difusion (la cual ya empezamos a hacer en los canales locales de
television. Como siempre, las sugerencias de los miembros de ACISOI
son bienvenidas. Les estaremos informando de todo lo que suceda con la
preparacion del evento.
A new OI society was formed in Colombia, here is the announcement in Spanish.
El 30 de Enero de 2.009 dimos inicio a la Fundación ACISOI (Apoyo y Centro de Información Sobre Osteogénesis Imperfecta)en Tuluá, Valle, Colombia.
Iniciamos con tres pacientes; actualmente hay 65 registrados, estamos trabajando en la página web y tenemos un plan de acción concreto que hemos
ido implementando gradualemente. Nuestros objetivos: los pacientes con OI, sus familias y el personal médico Colombiano que quiera aprender sobre OI
y ayudar a nuestros pacientes. Nuestro deseo es estar en contacto con Ustedes para formar parte de la familia mundial de ayuda a los pacientes con Huesos de Cristal.
Nuestro correo electrónico provisional es: fundacion.acisoi@gmail.com
New OI societies
The OIFE was contacted by the Chinese OI Society
CHINA
We have become aware of two new OI societies that were started
GREECE
and
PANAMA
NEW DISCUSSION on "Living independently with OI" started on the OIFE FORUM
Go to
category "general discussions"
If you have forgotten your password or have any other problem with registration
please contact the OIFE-forum moderator
New information item
We have added a new page on RODDING to our information pages.
At the moment this information is available in English, Dutch, Greek, French, German, Norwegian, Finnish, Russian, and Georgian, other languages will follow suit.
Research study on FORTEO
I would like to call your attention to information about a research study
currently recruiting adult participants in your area. The study is
designed to evaluate teriparatide (FORTEO), a drug already approved for
the treatment of osteoporosis. Adults 18 years of age and older, with a
diagnosis of osteogenesis imperfecta are eligible to participate.
If you are interested or would like more information, please contact
Mary Mullins, Research Coordinator
The Osteogenesis Imperfecta Foundation Medical Advisory Council has
reviewed this study design and approved it for dissemination to OI
Foundation constituents, for their information.
For other additional information about participating in research studies,
please read the OI Foundation fact sheet, Clinical Trials. It is
available on the OI Foundation web site at
www.oif.org, or by mail from
the OI Foundation office.
I hope you will share this information with any friends or family in the
OI community who might not have received this notice.
Mary Beth Huber
Information & Resource Director
OI Foundation
+1-800-981-2663
e-mail: mhuber@oif.org
