Recently, PFIC Voices released a guide for progressive familial intrahepatic cholestasis (PFIC) patients and families that will help them understand the condition and how they can get support. Progressive Familial…
Dear Parents, You need to understand that you are taking on a completely new role in your child’s life. You will no longer be controlling their hemophilia for them. It’s…
Why is non-adherence still a problem for many hemophilia patients? There’s a very simple answer here: it’s because hemophilia can be difficult to manage and hard to live with. There’s…
We often hear the term noncompliance when talking about patient-doctor relationships for individuals with hemophilia. In essence, it means the hemophilia patient hasn’t done what the doctor has asked them…
If you are the parent of a child who has a rare disease, you know how difficult it can be to explain why they can and can't do certain things.…
Getting a diagnosis of idiopathic pulmonary fibrosis, or IPF, has got to be scary. It's a progressive disease and the only "cure" is a successful lung transplant (which obviously carries severe…
For old-timers like me who grew up in the Dark Ages before the internet, it’s still amazing to think that you can access what amounts to the contents of the…
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