PATIENTS - Header_edited.jpg

PATIENTS

Being diagnosed with an ultra-rare condition can be really scary.
If you, or your child, has FOP we can help make the transition a little easier.


The very FIRST thing you need to know is that you are not alone!

Facing a new diagnosis can be scary and overwhelming, that’s why we’re here to help you navigate your journey in the best way possible.

All below mentioned resources are provided by the ifopa.org, the leading global FOP patient support organization.

CONNECT WITH THE FOP FAMILY

You are not alone. Your global FOP family is here for you. Click here to meet some of the other wonderful people and families who are going through similar things.  You'll find stories, support groups and blogs all talking about FOP.

WHAT IS THE ABILITY TOOLBOX?

The focus of the IFOPA's Ability Toolbox Program is to empower individuals with FOP by promoting independence through the use of tools and home adaptations.  Find more info here.

WHAT IS A L.I.F.E AWARD?

The Harold & Elaine Kaplan Quality of L.I.F.E. Award improves day-to-day life for individuals living with FOP.  It’s a $1,800 USD grant for every FOP patient. The recipient decides if they will use the grant all at once or in increments. Here is how to apply for it via the IFOPA, and what it can be used for.

THE RESILIENT LIVING PROGRAM

FOP impacts the entire family.  It isn't restricted to stressing the individual with FOP.

The IFOPA's Resilient Living program focuses on the emotional well-being of families — including siblings, caretakers, spouses and partners — giving them the skills to be able to bounce back from the challenges they face in life. Learn strategies of how to approach FOP and its challenges in a way that is productive rather than feeling helplessness. 

MEET SOME OF THE SOUTH AFRICAN FOP FAMILY WHO WERE RECENTLY CONNECTED!

Image by mostafa meraji

NO ONE GETS LEFT BEHIND
THESE ARE THE WORDS WE LIVE BY

On our search we come across people who have other musculoskeletal conditions and we do our utmost to assist them and connect them to care. 

As our network for FOP has many of the same doctors and specialists that any musculoskeletal condition would benefit from, it is a simple process to connect them into our network.

 

On our outreach projects we have found many children who are living with undiagnosed conditions, in these instances if it’s something we cannot assist with we refer them to Rare Diseases SA who have an extensive medical referral network and connect them to the right people for a diagnosis.