Sickle cell disease

Page no longer active. Follow @RaremarkHealth for #SickleCell
Our vision is to shape a world where all rare conditions are understood and treated. #RareDisease

[Sickle cell disease @Sicklecell_RM]

Follow @RaremarkHealth to keep seeing our posts!
Thank you for following us! We're going to be closing down this page but don't worry, just follow @RaremarkHealth for continued news, updates and more - across a range of rare diseases - including #SickleCell!

[Sickle cell disease @Sicklecell_RM]

Follow our new page @RaremarkHealth today!
This page is no longer making any active posts, but please hop over to @RaremarkHealth for continued rare disease news, updates - including posts on #SickleCell!

[Sickle cell disease @Sicklecell_RM]

Have you followed @RaremarkHealth yet?
This page will no longer making any active posts so follow @RaremarkHealth for continued rare disease news, updates and more - including posts on #SickleCell!

[Sickle cell disease @Sicklecell_RM]

What is prenatal genetic counseling?
Prenatal genetic counseling happens before or during a pregnancy. It helps couples or parents understand the risks that their child may be born with a genetic condition. #SickleCell #GeneTherapy
https://t.co/F9TBpAmquv

[Sickle cell disease @Sicklecell_RM]

FDA are giving priority review to Oxbryta in treating children aged 4-11. #SickleCell https://t.co/cHlc69aODd

[Sickle cell disease @Sicklecell_RM]

"You don't look like you have sickle cell" In this video Ijeoma talks about why sickle cell advocacy and awareness are important to raise the voices of those affected by what can seem like an invisible illness.

[Sickle cell disease @Sicklecell_RM]

Be an everyday advocate for #CF. From talking to people about a rare condition, to sharing posts on Facebook, to just making time for someone in need, there are many ways that someone can be an everyday advocate in rare disease.
#SickleCell

[Sickle cell disease @Sicklecell_RM]

Genetic testing: If a doctor thinks you may have a genetic disease based on your symptoms, they may do a genetic test to find out. That’s when they take a small sample of your blood or tissue and send it to a lab for testing. #RareDisease https://t.co/wIsfr0TTXN

[Sickle cell disease @Sicklecell_RM]

Managing side effects from your sickle cell treatments: Do you know the side effects of the most common sickle cell treatments? Learn what they are and how you can handle some of them on your own.
#SickleCell #SickleCellWarrior https://t.co/c72SWx0gWV

[Sickle cell disease @Sicklecell_RM]

"There is still so much that a lot of medical professionals don't know, so as patients, we have to help educate them - Quitnessa Peake, sickle cell advocate, Watch Quintessa's video for more great quotes on our YouTube video.
#SickleCell #SickleCellWarrior https://t.co/T1rXPxl2iJ

[Sickle cell disease @Sicklecell_RM]

When you have #sicklecell, how you tell your story often depends on who’s listening. Learn how Shirley talks about her own experiences. #SCDWarrior https://t.co/RuIzfYXlxY

[Sickle cell disease @Sicklecell_RM]

The University of California, San Francisco (UCSF) has been awarded $8.39 million to fund a Phase 1/2 clinical trial of CRISPR_SCD001, the first non-viral and CRISPR-Cas9-based gene editing therapy for sickle cell disease.
#SickleCell #RareDisease https://t.co/weUukTvEXo

[Sickle cell disease @Sicklecell_RM]

What is CRISPR? And how does it work?
CRISPR is a powerful gene editing tool that can make changes to the DNA of any living thing. But even if it cures some rare diseases in the future, there are still ethical questions. Learn more.
#SickelCell #CRISPR https://t.co/HazsC20wZu

[Sickle cell disease @Sicklecell_RM]

‘My daughter is one of the most amazingly bright, resourceful and resilient little girls I have ever met. In many ways, her strength surpasses my own.’ Read Lisa's story
#SickleCell #SickleCellWarrior https://t.co/aUOX5ki3Qa

[Sickle cell disease @Sicklecell_RM]

Gene therapy for sickle cell: When can we expect it?

Dr. Biree Andemariam answers this really important question.
#SickleCell

[Sickle cell disease @Sicklecell_RM]

What advice do you have for others living with sickle cell? Share your top tips with us, so we can share them with other sickle cell warriors.
#SickleCell

[Sickle cell disease @Sicklecell_RM]

We’re Raremark, and we’re building an online platform for rare disease patients and caregivers. To make sure it’s useful, we’re running a survey to find out what content patients and caregivers would like to see on our site. Let us know today!
#SickleCell https://t.co/Npiti0Eo9Q

[Sickle cell disease @Sicklecell_RM]

What is gene therapy?
Around 80% of rare diseases have a genetic link. Many of these diseases don’t have any good treatment options, but gene therapy might help. So what is gene therapy, and how does it work?
#SickleCell #SickleCellWarrior https://t.co/ZZcXG3GVfg

[Sickle cell disease @Sicklecell_RM]

What does 'patient voice' mean to you?
#SickleCell #SickleCellWarrior

[Sickle cell disease @Sicklecell_RM]

What it’s like to have severe iron deficiency anemia.
From https://t.co/dVKogp40HM
#RareDisease #Anemia #SickleCell https://t.co/3iI3sxmonH