Have you told your co-workers about your rare condition? What are the pros and cons? We take a look in this article: https://t.co/OlFmd7CUXC
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When someone in your family has a rare disease and you’re the primary caregiver, your household income is probably taking a hit. What are the facts, and what can help? We share some thoughts and resources: https://t.co/rtROteVw6G #MakeTheRareReal#costofhealthcare#healthcosts
What if you’re suddenly too ill to handle important tasks by yourself? Shirley shares some of her best tips about planning for life with an unpredictable health condition: https://t.co/2SgAdOGRYt #MakeTheRareReal#SickleCell#SickleCellWarrior#raredisease
It’s the worst feeling when you know you’re very ill but the people around you -- including your doctor(s) -- don’t think your symptoms are real. Here are some thoughts on what to do: https://t.co/PLcSLeSwoH
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See how others are living with rare diseases and share your experiences at Raremark. Head to our website to become a member: https://t.co/mQSb2w45oK
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If you have a rare disease or know someone who does, Raremark’s list of websites can help you find extra medical information and support. Check them out here: https://t.co/PpnCac8MrA
Getting a rare disease diagnosis isn't always easy, and it sometimes takes people years to get one. How hard was it for you? Share your story
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Do you have trouble remembering what to talk to your doctor about, or what they tell you? Here are some tips to help you keep track: https://t.co/qjzlaUz0Gh
Early Access Programs can be a way to access some drug treatments before they’ve been approved for sale. Learn more about them here: https://t.co/RWx0W8v3g1
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What advice would you give to others living with the same rare condition as you? Sign up or log in to Raremark and share your answer: https://t.co/ErzFewg8Oy
Learning about the experiences of people in a similar position can be really powerful. Here are a few ways you can find patient communities:
1. Search for them on Facebook or Google
2. Join a website like https://t.co/CfaKLRLXAb
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