Upcoming: A Forum on FOP

A Forum on Fibrodysplasia Ossificans Progressiva, FOP, The Disease and Its Attending Nursing

Fibrodysplasia ossificans progressiva, myositis ossificans progressive, FOP, is a very unusual inherited rare disease. The earliest described case of this disease can be traced back to the year 1692. However, for the past 300 years, the total number of FOP documented cases was merely less than one thousand. For its extremely unusual, the medical realm still could not reckon the incidence of this disease. According to a rough estimation from United Kingdom, there are only 15 FOP cases out of the 2.5 million people in Taiwan. (point prevalence rate in U.K.= 0.6/1 million) Actually, there are only 5 reported FOP patients in Taiwan at present. It even shows how RARE this disease is.

To stimulate related medical intercourses and offer more opportunities for the patients’ family to share their experiences of attending nursing, we invite the most authoritative FOP researcher in the world, Dr. Frederick S. Kaplan from The University of Pennsylvania School of Medicine, and the author of the book “Finding the Magic Mountain: Life with Five Glorious Kids and a Rogue Gene Called FOP”, Dr. Carol Zapata-Whelan and her son with FOP disease, Vincent Whelan to visit Taiwan. They will share their precious knowledge and attending experience on FOP. We believe this meaningful activity will be a great stimulation for our research on FOP and for its attending nursing.

Sponsor:
Taiwan Foundation for Rare Disorders, 
Genetic Center of National Chung Kung Univ. Hospital 
Time:
May 19,12:30-14:30 pm
Site: 
Room 4C,National Chung Kung Univ. Hospital
Participants:
Physicians, medical researchers, medical students, patients and their family.

Agenda:
Section I
Time: 12:30~13.30
Title: Why Do Some People Form Two Skeletons?
Speaker: Dr. Frederick S. Kaplan Section II

Section II
Time: 13:40~14.20
Title: Finding Magic Mountain: Our Family's Life with a Rare Disorder Called FOP
Speaker:Dr.Carol Zapata-Whelan & Mr. Vincent Whelan
It’s free to take part in our forum. If you are intending to attend the forum, please email to: rp02@tfrd.org.tw (Ms. Huang) and leave your name, occupation, and contact details. Thank you!