Rare Disease Meme – Coffee: A cup with of benefits
Syngap-1 First International Conference!
Congratulate this Mom- She knew something was wrong. She went through 19 specialists in 4 years. She eventually got a diagnoses. Her son, had Syngap1, a very rare, gene based,…
Drum Roll Please and the Winner is …
Congratulations to Kristin, the winner of a $500 travel stipend to get to the 2016 Acromegaly Community Bi-annual Meeting! Patient Worthy is so excited to meet you Kristin! We are excited to…
Editor’s Choice: 3 Powerful Messages From Inspiring Women
It's officially April and it's officially the WEEKEND! PW Contributor Alexis writes of how her experience with PTSD relates to going through the process of diagnosis and treatment of chronic…
Rare Disease Meme – Silence and Reflection
A Van. A Plan. A Life Saved From Aplastic Anemia
OK... I hereby promise to never again make a blonde jokes. Why? Because two blonde sisters, Sam and Alex Kimura, are definitely no joke. They are a powerhouse of promise…
How Will You Be Celebrating World PI Week This Year?
World PI Week is coming up later this month, from April 22-29. So what better way to celebrate than to learn what exactly PI is! Not to be confused with Pi…
4 Year Old with Super Cool Glasses and Myasthenia Gravis
When Myasthenia Gravis is diagnosed in a child, it is called juvenile myasthenia gravis (JMG). But for 4 year old Julius Chatman, the diagnosis was ocular myasthenia gravis. A very rare case,…
The Best Advice To Solve Problems With PI And Parents
If there was one song that could get me poppin’ throughout my childhood, it would have to be “Parents Just Don’t Understand” by the Fresh Prince himself. Come on, you…
People with CVID Aren’t Contagious, YOU Are!
Raise your hand if you've called out sick from work or stayed home from school for something as simple as the common cold? Well, I'm just going to assume most of…
#SarcoidosisAwareness: Treatment
we may look different on the outside, but each one of us is unique on the inside, and that holds true more so when it comes to treatment options. I'm…
Consejos sobre cómo hacer que las inyecciones para su hijo no sean traumaticas
Los tratamientos para enfermedades autoinflamatorias comúnmente requieren un paciente para recibir inyecciones debajo de la piel, lo que puede ser difícil si usted es el padre de un niño pequeño…
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