IFOPA retweeted
Yesterday was @rarediseaseday Trafford Council showed their support for those living with rare diseases by lighting up their town halls as part of the Global Chain of Lights. @TraffordCouncil Thank you to the Buildings Team who made this happen.
IFOPA retweeted
It’s Africa and Europe’s turn to display the #RareDiseaseDay colours ✨💙💚💜✨
Illuminations all around the world form our Global Chain of Lights 👉 cutt.ly/MPUWDKx
#LightUpForRare
IFOPA retweeted
We did it again!
@ern_reconnet lights up the Leaning Tower of Pisa on #RareDiseaseDay 2023 to raise #awareness and generate change for the 300 million people worldwide living with a #raredisease, their families and carers.
ERN ReCONNET. More than a Network.
@rarediseaseday
ALT Photo of the Leaning Tower of Pisa lighted up in the colours of Rare Disease Day
ALT Photo of the Leaning Tower of Pisa lighted up in the colours of Rare Disease Day
ALT Photo of the Leaning Tower of Pisa lighted up in the colours of Rare Disease Day
IFOPA retweeted
Are you enjoying #RAREBones? Make sure you subscribe to never miss an issue. bit.ly/FREEMAGSUBSCRIBE
IFOPA retweeted
The number of conditions with a known molecular basis has gone from a few dozen to over 6,000. But 95% of these have no treatment. - Dr. Austin, @ncats_nih_gov #2020RDDS
IFOPA retweeted
The translational process for a variety of reasons is almost a trial and error process. - Dr. Austin, @ncats_nih_gov #2020RDDS
IFOPA retweeted
About 250 new rare diseases are identified every year! - Dr. Austin, @ncats_nih_gov #2020RDDS
IFOPA retweeted
There are currently over 900 active INDs as of the end of 2019. - Dr. Austin, @ncats_nih_gov #2020RDDS
IFOPA retweeted
"Rare diseases are not rare. They are a public health issue. And until policy makers get their heads around this issue we will never make headway." - Dr. Austin, @ncats_nih_gov #2020RDDS #raredisease
IFOPA retweeted
#FOPAwarenessDay: Our scientist Alison is inspired every day to advance care for people with #FOP.
IFOPA retweeted
For our #BlueCrew member Tim, #FOPAwarenessDay is important to him because those living with FOP need to know they’re not alone, and that companies like ours are working hard to bring a potentially transformative therapy to them.
IFOPA retweeted
The next step toward a treatment for FOP will require the continued collaboration between people with FOP, caregivers, patient groups, academic institutions and industry. Learn more from @IFOPA at ifopa.org/symptoms or @FOPfriends. #CureFOP
IFOPA retweeted
#DYK an important early sign of FOP is malformed big toes present at birth? It’s important that pediatric HCPs such as @AAFP @PedsNurses @AmerAcadPeds keep this little-known genetic disorder in mind. For more info: ifopa.org/symptoms. #FOPAwarenessDay
IFOPA retweeted
This #FOPAwarenessDay, we celebrate the discovery of ACVR1, the gene associated with FOP, and new approaches that are helping us to better understand the disease. There is hope for the future. #CureFOP
IFOPA retweeted
It’s great meeting people that are always on the other end of the phone/email in person. So grateful for @RareDiseases and @DebbieDrell #cureFOP #ShowYourRare #RDDNIH @RBDAlliance @RareDayUS
IFOPA retweeted
With my colleague and friend Charlene Waldman in Washington, DC meeting with the Rare Bone Disease Alliance. Grateful to Hillary Weldon for helping found this organization. #cureFOP #ShowYourRare @RBDAlliance @RareDayUS
IFOPA retweeted
Congratulations to Frederick Kaplan, from Orthopaedic Surgery, who has been given the Grand Hamdan Award on Musculoskeletal Disorders as part of the Shaikh Hamdan Bin Rashid Maktoum Awards for Medical Sciences. @PennSurgery, @IFOPA, bit.ly/2ActHpU
IFOPA retweeted
Use positive language choices when preparing a child for blood draws & other potentially *scary* procedures. Buzzy might help too #fopfamily18
@ifopa buzzyhelps.com – at Baltimore, MD
IFOPA retweeted
Let us know what kinds of tools you’re using & they might wind up in the new @ifopa Resource Connect Guidebook! #fopfamily18 – at Baltimore, MD
