List of rare diseases in adults

Transitioning to adulthood is hard enough. Doing it with a rare disease? That may require some guidance. So, Global Genes has put together a new RARE Toolkit called “Taking Control: Gaining Independence as a Young Adult with a Rare Disease.”

If you’ve found yourself wondering things like, ow am I supposed to manage my treatment alone? Is my medical team the one I want to move forward with? If I decide to find a new doctor, how will I pick one? What will I ask them?

With so many changes in healthcare policy, you might be wondering about things like, How long will my parent’s insurance cover me? What if I have to chose my own health plan? How will I decide?

One of the biggest challenges for young patients is getting ready to claim their independence comes with leaving the nest. Deciding when and where to move, how to prepare for emergencies and how to handle the common complications of rare and chronic illnesses on your own.

We’ve included perspectives from patients and experts who can help illuminate the murky and often complex maneuvering it takes to manage support–both medical and emotional–while building your own solid foundation for adulthood.

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Popular Q&A

Are you aware Catamenial Pneumothorax has been added to the rare disease list at the NIH?

Catamenial Pneumothorax is caused from endometriosis on the lung, which causes the lung to collapse.

Thank you for helping to bring awareness through your book and your internet posts to this form of Endo. The more the words gets out, the better. Keep up the good work.

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