FOP Prognosis
A diagnosis of Fibrodysplasia Ossificans Progressiva is life-changing. It is an ultra-rare medical condition and there is not a lot of good information out there, but breathe. You are not alone. With the help of other families and parents, we have identified some key questions that families struggled with during their child's diagnosis and in the days following.
Thanks to social media our we have a very supportive and connected community of families, researchers and doctors.
Thanks to social media our we have a very supportive and connected community of families, researchers and doctors.
How Do I Cope with My Child's Diagnosis?
Research and Find a Good Doctor
Some families are lucky enough to have a general practioner who is willing to do the extra work to research and help your family get the answers you need and make connections with other specialists. A lot of the time, due to the rareness of this condition and their busy caseloads they may not be able to do this. It is best to have this conversation early before you are in crisis and in need of medical advice, x-ray requisitions or prescriptions.
Emergency Medical Contact Information
Frederick Kaplan, MD
(215) 349-8726/8727 (office)
(215) 545-0758 (home)
E-mail: [email protected]
Robert Pignolo, MD
(215) 349-8726/8727 (office)
(215) 308-9643 (pager)
E-mail: [email protected]
(215) 349-8726/8727 (office)
(215) 545-0758 (home)
E-mail: [email protected]
Robert Pignolo, MD
(215) 349-8726/8727 (office)
(215) 308-9643 (pager)
E-mail: [email protected]
Learn All You Can Learn about FOP
We are happy to help and answer your questions or seek out answers if we don't have them. Our expert partner, the International FOP Association, www.ifopa.org is a wealth of resources and CFOPN depends on the IFOPA for up-to-date medical information. IFOPA is the most responsible site to find answers and CFOPN endorses them.
Connect with Other Families
We can connect you with other families in Canada who can mentor you through this difficult time and share their experiences and wisdom in raising a child with FOP.
What Does FOP Mean for My Child or Me?
A diagnosis of FOP is a life changing event. Each family will respond differently depending on the circumstances of diagnosis. Protecting your child from viral or physical trauma is paramount. Support Guidebooks and Emergency Medical Information/Treatment Guidelines are available.
How Will My (Child's) FOP Progress?
FOP is very unpredictable and unique in each child and individual. There are some common characteristics. For more detailed information on FOP symptoms, follow link.
