Everyone deserves quality healthcare—regardless of age.
Aging out of pediatric care shouldn’t mean you lose access to proper medical support.
But, unfortunately, that’s often what happens.
For individuals with rare diseases like fibrodysplasia ossificans progressiva (FOP), adult healthcare providers frequently lack experience and knowledge about the complexities of treating rare diseases. Finding a healthcare provider willing to work with an adult patient can be exhausting, time-consuming and expensive.
“It often feels like I’m the one responsible for connecting the dots between different doctors and specialists,” says Jordyn, an individual with FOP. “There is no clear roadmap for transitioning care, leaving me stuck between pediatric providers who can’t treat adults and adult doctors who don’t know how to manage my condition.”
For individuals like Jordyn, this isn’t just inconvenient; it directly impacts health and quality of life. Many adults bounce from provider to provider or go years without any medical care at all.
That’s why the IFOPA is joining other patient advocacy groups in the Rare Bone Disease Alliance on the Somewhere to Go initiative. This program will:
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Seek to better understand what is happening in transition of care, specifically for those with a rare disease
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Identify measures to track and credibly demonstrate the need for additional support in transitioning between pediatric and adult care
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Implement support resources for healthcare providers, patients and the healthcare system as a whole
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Improve patient readiness for the transition of medical care.
“While there’s still significant progress to be made, it was encouraging to see experts actively working toward better standards to bridge this critical gap in our healthcare,” says Jordyn after attending a recent Somewhere to Go meeting.
Patient advocacy is a core pillar of our mission as an organization, and we’re excited about the future of this program and what it could mean for our community!
If you need support finding a healthcare provider locally or knowing what types of resources you can share to help get them up-to-speed on FOP, reach out to Family Services Manager Hope Newport at [email protected] or +1 (785) 294-1607 (also available on WhatsApp).
