Raremark

Helping you better understand, manage and talk about rare disease. Join us at

[Raremark @RaremarkHealth]

Finding information and support for #raredisease can be tough. Together we can change that. Join Raremark: https://t.co/KnZudvHnIM

[Raremark @RaremarkHealth]

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

#MakeTheRareReal #RareDisease

[Raremark @RaremarkHealth]

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

[Beacon for Rare Diseases @RareBeacon]

#DidYouKnow?

Register to attend for FREE now to enjoy:

🎙️ 50+ speakers
🌎 from over 20 countries
🌐across 6 continents

https://t.co/eHS5SbAdqr

[Raremark @RaremarkHealth]

Which 5 words would you use to describe your rare disease? Share your answer on the Raremark website here: https://t.co/HBy1mdT7t8 #MakeTheRareReal

#RareDisease #RareHeroes #RareHope

[Raremark @RaremarkHealth]

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

[Raremark @RaremarkHealth]

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

#MakeTheRareReal #RareDisease

[Raremark @RaremarkHealth]

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

#RareDisease #RareHeroes #RareHope

[Raremark @RaremarkHealth]

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

[Raremark @RaremarkHealth]

Which song lyrics capture your experience living with a rare disease? Here's what Raremark members said: https://t.co/GZJniiGDFt

[Raremark @RaremarkHealth]

Wondering what genetic testing is all about? We spoke to some specialists to learn more, see the full interview here: https://t.co/fX1d6PWvTC

[Raremark @RaremarkHealth]

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

#RareDisease #RareHeroes #RareHope

[Raremark @RaremarkHealth]

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

[Raremark @RaremarkHealth]

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

#RareDisease #RareHeroes #RareHope

[Raremark @RaremarkHealth]

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

[Raremark @RaremarkHealth]

Together we can help each other understand, manage, and talk about rare disease. Join Raremark: https://t.co/zZwzAT3ZJv

[Raremark @RaremarkHealth]

You’re the best judge of your own body and how it’s doing. Here are a few ways you can advocate for yourself: https://t.co/fgLEawSzF2

[Raremark @RaremarkHealth]

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

#RareDisease #RareHeroes #RareHope

[Raremark @RaremarkHealth]

@amyM_chronicmom That's fantastic! Best of luck and let us know if we can help in any way

[Raremark @RaremarkHealth]

Let's chat! It's a new year, full of new opportunities. What would you love to achieve this year? Drop your answers in the comments below

[Raremark @RaremarkHealth]

As we step into the new year, here are a few tips to help you plan ahead and manage your health: https://t.co/2IbLqcjxVT

#RareDisease #PlanningAhead