Communication is key, and it’s extra-important for patients with rare diseases.
Be sure to communicate with your doctors; how you’re feeling and what you want to know.
Communicate with your friends and family. Let them know how they can help, what you need, and what your limits are for plans and excursions. People will often be stuck in that uncertain zone of wondering if they should offer to help with something, not wanting to offend.
Don’t be afraid to speak up and advocate for yourself!
Sign Up With a Patient Worthy Account and Share Your Rare Story
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Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
