Twitter | Search | |
Search Refresh
Greg Creese Jul 1
Replying to @RexChapman
Reply Retweet Like
The Notorious EEG (M. Scott Perry MD) Jul 11
We’ve got to find a better approach to . It does no good to develop a treatment that people needing it can’t get. A family is trying to raise over $2 million to give their daughter a gene therapy treatment to save her life - CNN
Reply Retweet Like
Hope for Hasti Jul 20
Chris is due to arrive at Downing Street tomorrow and had planned weeks ago to hand over a petition. Unfortunately the petition has only just been approved by the government and needs as many signatures as possible. Please share!
Reply Retweet Like
Strawfie Challenge Jul 9
As a community we've achieved what seemed impossible. From obscurity we made the fight for CF modulator therapies mainstream. Our made headlines on TV/radio/in print for months when was dominating the news. So many contributed to 👏👏Proud of you all.
Reply Retweet Like
Sheena Theriault Jul 12
URGENT help required please. A friend of mine is in intensive care, struggling to stay conscious and breathe. The is aware of her issues and what treatment she requires, and yet they do nothing. Please see email below. Please share.
Reply Retweet Like
Princess, The Tower Jul 25
“Living with is like climbing Mt. Everest over and over again, every single day, except the territory always changes slightly. Nothing is predictable.” Living With Chronic Illness Is Relentless
Reply Retweet Like
Through the Fibro Fog Jul 14
'When I was diagnosed with MCAS I was totally clueless . . . I hadn’t ever heard of it, and definitely didn’t know about triggers that would cause my mast cells to excessively release histamine'
Reply Retweet Like
CRMO 18h
Colorado girl finds treatment she needs at UI Stead Family Children’s Hospital
Reply Retweet Like
ASH Jul 25
Our clinical practice guidelines on immune thrombocytopenia aim to help you provide the best care for your patients. Access the guidelines and helpful resources here:
Reply Retweet Like
Princess, The Tower Jul 14
is truly humbling… Despite the pain, I will continue to search for peace within my body and love it for everything it can achieve, even if it is something as simple as putting my feet on the floor.”
Reply Retweet Like
Yoni Maisel Jul 25
Reply Retweet Like
RareConnect Jul 21
We need your help! We're looking for organizations that support patients in or . Any suggestions as to how we can help the families and the patients?
Reply Retweet Like
Lynn Julian Jul 22
Reply Retweet Like
Jeans for Genes Jul 22
How great does Claire and her twin nieces look in our T-shirts? Share your T-shirt pics and help to raise awareness of
Reply Retweet Like
Rare Disease UK Jul 2
1 in 5 people affected by a condition have experienced disruption to access to their usual medication during the . Read more here:
Reply Retweet Like
Cystinosis Ireland Jul 16
Hosting our second virtual conference of the year - lockdown has really changed how we are working this year! Delighted so many of our research, scientific and clinical colleagues from around the world are joining the
Reply Retweet Like
Charlotte Proud Jul 24
⬇️ I’ve now gone 7 months without any fractures 🙌🏻👊🏻 (2017 was the last time I went a full year without breaking anything!) Just going to continue enjoying my running and building up my strength/fitness ☺️🏃🏻‍♀️🏃🏻‍♀️
Reply Retweet Like
Genomics Education Jul 19
Did you know, when it comes to rare disease, 'rare' is actually common. Find out more here:
Reply Retweet Like
Hope For Ataxia Jul 22
Scotsman Iain McGeachin has raised awareness of the little-known disease Spinocerebellar Ataxia, following his own diagnosis in March 2015.
Reply Retweet Like
Chan Zuckerberg Initiative Jul 7
30 inspiring stories of patient-led organizations that are accelerating research.
Reply Retweet Like