Editor’s Choice: Powerful Purple Crayons and Supermoms

Welcome to Friday Patient Worthians! This week we have stories on cystinosis and super moms with sickle cell! Additionally, we have a patient story on dystonia and an upcoming event. Lastly, an…

Continue Reading Editor’s Choice: Powerful Purple Crayons and Supermoms
Nothing About Addison’s Disease is Simple, Here’s Why
https://pixabay.com/en/labyrinth-target-away-conception-2037903/

Nothing About Addison’s Disease is Simple, Here’s Why

People with Addison's disease often appear just fine on the outside, but on the inside, it's another story. Why? Just above the kidneys are two hormone-producing glands called the adrenal…

Continue Reading Nothing About Addison’s Disease is Simple, Here’s Why
We Found A Great Chudley Rozdilsky Syndrome Resource Just For You!
https://pixabay.com/en/adventure-blonde-hair-exploring-1868817/

We Found A Great Chudley Rozdilsky Syndrome Resource Just For You!

New information about rare diseases is always being discovered. As new symptoms are documented from patients and new research is developed, there’s a good amount of data that needs to…

Continue Reading We Found A Great Chudley Rozdilsky Syndrome Resource Just For You!
If Your Child Has CPSD, Then We Have the Best Resource You Need
https://pixabay.com/en/baby-child-toddler-girl-childhood-933097/

If Your Child Has CPSD, Then We Have the Best Resource You Need

When you hear your newborn's been diagnosed with a rare disease, you may feel like you have to become a scientist in order to raise them. Parenting a child without…

Continue Reading If Your Child Has CPSD, Then We Have the Best Resource You Need

HAE In the News

Want some more news, events and announcements on HAE? We got 'em! [one_half]     [/one_half] [one_half_last] Get the Most Updated HAE Treatment Information Treatments Are Available: What Now? New,…

Continue Reading HAE In the News
Close Menu