Salla Treatment And Research (STAR) Foundation

STAR is a non-profit dedicated to Salla disease research, treatments & family networks. We no longer actively "tweet" Find us on Instagram & visit our website!

[Salla Treatment And Research (STAR) Foundation @sallaresearch]

@sallaresearch will no longer be posting on X. We highly value our STAR community! Follow our website: https://t.co/ExPnpYD5jG
Facebook https://t.co/sYL0vJk8OZ, Instagram https://t.co/GwsDMjgysQ
Linked in https://t.co/pn1MaDkoz7

[Salla Treatment And Research (STAR) Foundation @sallaresearch]

Happy Summer! Part 2 of our Summer 2024 Newsletter is attached!

[Salla Treatment And Research (STAR) Foundation @sallaresearch]

Happy Summer! It's time for our 2024 Summer Newsletter - part 1 of 2 is attached!

[Salla Treatment And Research (STAR) Foundation @sallaresearch]

We've teamed up with Rare-X to accelerate the
diagnosis, disease understanding, and
development of future treatments and
cures for Salla disease.
Please include your family in our patient registry today! https://t.co/B7M5ytr9LR
Questions? contact [email protected]

[Salla Treatment And Research (STAR) Foundation @sallaresearch]

The STAR RARE-X patient registry is LIVE.

Click here to get started: https://t.co/B7M5ytr9LR Scroll down for Frequently Asked Questions and log in instructions.
The registry is for Salla patients of ALL ages.

need help? contact [email protected]

[Salla Treatment And Research (STAR) Foundation @sallaresearch]

Launch time! 12:00 pm ET on May 8, 2024. It's not too late to register
https://t.co/SjOPaGH8Cb
Cant make it? Recording will be available (with transciptions in any language) right after the meeting. contact [email protected]

[Salla Treatment And Research (STAR) Foundation @sallaresearch]

Six more days! Register now for our RARE-X launch party! Learn all about our new patient registry https://t.co/SjOPaGH8Cb

See you then!!!

[Salla Treatment And Research (STAR) Foundation @sallaresearch]

Love this new children's book, Sami's Smile, about the unique challenges and experiences Sami faces, living with Salla disease. Beautiful story and illustrations! https://t.co/7IziKVedgz

[EURORDIS-Rare Diseases Europe @eurordis]

In today's address at the Sorbonne, French President Emmanuel Macron focused on the urgent need for a comprehensive European health strategy, including tackling the lesser-highlighted yet critical area of rare and orphan diseases.

🧵⤵️

[Salla Treatment And Research (STAR) Foundation @sallaresearch]

#BeCounted Learn all about STAR's new patient registry Wednesday May 8 2024; 12:00 Eastern Time US (1 hour)
Register in advance: https://t.co/SjOPaGH8Cb

EVERY PATIENT EXPERIENCE MATTERS!
See you there! Questions? contact [email protected]

[Salla Treatment And Research (STAR) Foundation @sallaresearch]

STAR Foundation is partnering with RARE-X to launch a new patient registry! Please join our launch party to learn all about it and how to sign up. Wed May 8, Noon Eastern (US) (1 hour)
Register in advance: https://t.co/SjOPaGH8Cb

Questions? [email protected]

[Salla Treatment And Research (STAR) Foundation @sallaresearch]

So proud to share this publication Thank you Dr Stephen Walkley and team. The "Operation IDD Gene Team" led to the creation of STAR!
Using team-based precision medicine to advance understanding of rare genetic brain disorders https://t.co/J57s5EB8fE

[Salla Treatment And Research (STAR) Foundation @sallaresearch]

Have you seen our beautifully updated website?? https://t.co/cYNRMF2xKV Share with family, friends and your child's clinical team. They can go to the 'get involved' tab to sign up for our newsletter or be added to our clinician database. #freesialicacidstoragedisease (#fsasd)

[Salla Treatment And Research (STAR) Foundation @sallaresearch]

Powerful piece in @RareRevolutionM - The Impact of Rare Disease on siblings.
https://t.co/hkscdb2gRo

[Salla Treatment And Research (STAR) Foundation @sallaresearch]

#rarediseaseday is almost here! Get a head start by attending the #rarediseaseschat this week! https://t.co/KtESwknsOs

[Wang-LysoLab @WangLysolab]

What a fantastic, dedicated, and kind group of researchers to work with to advance therapy for #freesialicacidstoragedisease (#fsasd) #worldsymposia

@sallaresearch

[Salla Treatment And Research (STAR) Foundation @sallaresearch]

@WangLysolab @sallaresearch could not ask for a better team! thank you for all you do for our families ♥️

[Rare Advocacy Movement @RareAdvocacy]

“In the world of rare, every story is an epic tale.” – Sara Williams

#valentinesday
#dayoflove
#rare360
#livingrare #lovingrare #rarelove
#rarediseases #raredisease
#rareadvocacy #rareactivism
#lovestory
#spoonies
#rarejourney
#rarewarrior

[Salla Treatment And Research (STAR) Foundation @sallaresearch]

Wishing all of our STAR families around the world a Happy Valentine's Day!
God valentinsdag 💙
Hyvää ystävänpäivää 🩷
Feliz día de San Valentí 💛
Fröhlichen Valentinstag 🧡
Glad alla hjärtans dag 💚
Feliz Dia dos namorados 💜
Joyeuse saint Valentin ♥️

[Lysosomal&Rare Disorders Research&Treatment Center @LDRTC_USA]

LDRTC 's first Satellite Symposium at WORLDSymposium 2024. #WORLDSymposium