Raremark

Finding information and support for #raredisease can be tough. Together we can change that. Join Raremark: bit.ly/30z4fMg

Have you told your co-workers about your rare condition? What are the pros and cons? We take a look in this article: bit.ly/34OZksj #MakeTheRareReal #RareDisease

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: bit.ly/3qzojIG #MakeTheRareReal #costofhealthcare #healthcosts

#DidYouKnow? Register to attend for FREE now to enjoy: 🎙️ 50+ speakers 🌎 from over 20 countries 🌐across 6 continents findacure.org.uk/rare-disease-s…

Which 5 words would you use to describe your rare disease? Share your answer on the Raremark website here: bit.ly/3KlBg0B #MakeTheRareReal #RareDisease #RareHeroes #RareHope

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: bit.ly/3FEQ7zN #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: bit.ly/3roY3jh #MakeTheRareReal #RareDisease

See how others are living with rare diseases and share your experiences at Raremark. Head to our website to become a member: bit.ly/3FqpkqM #RareDisease #RareHeroes #RareHope

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: bit.ly/3flRxEj

Which song lyrics capture your experience living with a rare disease? Here's what Raremark members said: bit.ly/3tlBC19

Wondering what genetic testing is all about? We spoke to some specialists to learn more, see the full interview here: bit.ly/3HUI0Aw

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

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: bit.ly/335xB6i

Early Access Programs can be a way to access some drug treatments before they’ve been approved for sale. Learn more about them here: bit.ly/3qbjc0W #RareDisease #RareHeroes #RareHope

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: bit.ly/3JNIKcl

Together we can help each other understand, manage, and talk about rare disease. Join Raremark: bit.ly/3JS7T5S

You’re the best judge of your own body and how it’s doing. Here are a few ways you can advocate for yourself: bit.ly/3qOoGOq

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 raremark.com #RareDisease #RareHeroes #RareHope

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

@RaremarkHealth I'd love to be able to self administer ivig at home. Pushing to get funding and training to allow me to do this.

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

As we step into the new year, here are a few tips to help you plan ahead and manage your health: bit.ly/3JI6TBc #RareDisease #PlanningAhead