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From Reactive to Proactive: Self-Administered Treatment

There's been a big change this year in how I approach my rare disease, hemophilia A. I'm treating myself at home once a week. Until now, I have always treated...

By Shawn Decker

3 min read

Journey to a Rare Disease Diagnosis

Getting a new rare disease diagnosis can be a difficult undertaking. Some conditions, such as narcolepsy, are so misunderstood that it can take years to get an official diagnosis! The...

By Tatiana Corbitt

2 min read

Early Intervention Gave Me Hope

When I first heard, "Your child has a global developmental delay," my heart shattered. At 22, a new and young mom, I knew something wasn't quite right the day my...

By Alex Gaudlap

3 min read

From Reactive to Proactive: Self-Administered Treatment

There's been a big change this year in how I approach my rare disease, hemophilia A. I'm treating myself at home once a week. Until now, I have always treated...

By Shawn Decker

3 min read

Journey to a Rare Disease Diagnosis

Getting a new rare disease diagnosis can be a difficult undertaking. Some conditions, such as narcolepsy, are so misunderstood that it can take years to get an official diagnosis! The...

By Tatiana Corbitt

2 min read

Early Intervention Gave Me Hope

When I first heard, "Your child has a global developmental delay," my heart shattered. At 22, a new and young mom, I knew something wasn't quite right the day my...

By Alex Gaudlap

3 min read

From Reactive to Proactive: Self-Administered Treatment

There's been a big change this year in how I approach my rare disease, hemophilia A. I'm treating myself at home once a week. Until now, I have always treated...

By Shawn Decker

3 min read

Journey to a Rare Disease Diagnosis

Getting a new rare disease diagnosis can be a difficult undertaking. Some conditions, such as narcolepsy, are so misunderstood that it can take years to get an official diagnosis! The...

By Tatiana Corbitt

2 min read

Early Intervention Gave Me Hope

When I first heard, "Your child has a global developmental delay," my heart shattered. At 22, a new and young mom, I knew something wasn't quite right the day my...

By Alex Gaudlap

3 min read

Don't Put Things Off With Rare Disease

Don't get me wrong—I can sometimes be the queen of procrastination. I have my "lazy" moments. But I want people to understand that if, sometimes, well, often, I don't do...

By Annie-Danielle Grenier

2 min read

1 comments

Tips for How to Set Boundaries With Others

More likely than not, if you're reading this, then you've likely experienced someone crossing your boundaries as a chronic illness/rare disease patient, telling you or implying that your condition isn't...