Top Tweets for #WSSAwareness
Many diagnosed with Wiedemann-Steiner Syndrome also share a diagnosis of autism. We celebrate and advocate for them every day!
#WiedemannSteinerSyndrome #WSSawareness #CelebratedDifferences #autism #AutismAwareness #AutismAcceptance #RareDisease #CareforRare
Calling all #WSS families in Australia, New Zealand and other areas of Oceania!
We have organized a live, virtual session on March 25 featuring two WSS experts to answer your questions. Register at: https://t.co/9nCPef3qpc
#WiedemannSteinerSyndrome #WSSawareness #WSSwarriors
Today is #RareDiseaseDay!
We're grateful for our WSS community & proud to raise awareness, provide education & advocate for research. Today, we celebrate YOU! π§‘π
Share your story & read others: https://t.co/W6NNW2cATv
#CareAboutRare #WiedemannSteinerSyndrome #WSSawareness
Our #WiedemannSteinerSyndrome community is uniting with 10,000+ other rare diseases for @rarediseaseday on Feb 28. Together, we are MANY, STRONG and PROUD!
Read the stories of our #WSSwarriors. Visit: https://t.co/W6NNW2cATv
#CareAboutRare #WSSawareness #WSS #RareDiseaseDay
#RareDiseaseDay is Feb 28. Like many #rarediseases, #wiedemannsteinersyndrome needs more support, education & research. Learn insights from Allison in USA, who is a tireless advocate as an adult with #WSS. Read her letter: https://t.co/tQ8IxnS50y
#CareAboutRare #WSSawareness
Our #WSSwarriors can face cardiac abnormalities, needing surgery (based on #WSS research & patient-reported data in the WSS Data Collection Program). To honor #hearthhealth, we raise #WSSawareness & advocate for more research on #WSS.
#OurHearts #raredisease #CareaboutRARE
Join us for your chance to speak with a WSS expert. Few spots remain for this intimate conversation. RSVP: [email protected].
More sessions to come as we prepare for #XcelerateRARE2023 by @RARE_X_ in 2023. Help us raise #WSSawareness & enroll: https://t.co/GpVf5GtTlv.
WSS Foundation is participating in Xcelerate RARE: A Rare Disease Open Science Data Challenge hosted by @RARE_X_ in March 2023.
Your patient-reported data is the key to raise #WSSawareness. Enroll Today! https://t.co/B3yzj8nj24
#XcelerateRARE2023 #WiedemannSteinerSyndrome
Meet Bo from USA!
As one of the youngest #WSSwarriors diagnosed at 6 months old, Bo is benefiting from strong family & early intervention support. Read more: https://t.co/QnWJDR2zEU.
Countdown: 3 months until #WSSAwarenessDay !
#wiedemannsteinersyndrome #WSS #WSSawareness
Meet Hannah from the UK!
She discovered her #WSS diagnosis at 11 years old, after years of searching. Her mother, Jacqueline, shares their diagnostic journey: https://t.co/Uud3mjetO0
Countdown: 4 months until #WSSAwarenessDay (Sept 15)! #wiedemannsteinersyndrome #WSSawareness
Meet Lexi from Belgium!
Like many #WSSwarriors, Lexi has many early #WSS symptoms & just received an #autism diagnosis. Read her story with our #wssawareness monthly feature & during #autismacceptancemonth.
https://t.co/zm1VqVE1yF
#wiedemannsteinersyndrome #autismacceptance
For #AutismAcceptanceMonth, we're pleased to share this post from Jillian, a WSS regional ambassador & mom who recommends many resources on autism. Learn more by reading her story: https://t.co/PIcruLhw5C
#wiedemannsteinersyndrome #WSS #WSSawareness #autism #autismacceptance
Meet Spencer from the UK!
He's overcoming many WSS symptoms and growing into his big personality. His mother shares their journey as we mark 6 months until WSS Awareness Day on Sept 15.
https://t.co/f3Cme7Ir1Y
#wiedemannsteinersyndrome #WSS #WSSawareness #WSSwarriors
On Rare Disease Day, we honor all our #WSSwarriors & families from across the world π§‘π
We kick off our day's celebration with a letter from Allison Barnes, an adult with #WSS. Read her message at: https://t.co/GGUKi4Vzjy
#wiedemannsteinersyndrome #WSSawareness #RareDiseaseDay
Rare is Many π§‘π #WiedemannSteinerSyndrome is among 6,000 rare diseases & discovered in 2012 due to mutations on KMT2A gene. Before, many searched for answers, like 40-yr-old Sarah in UK. On #RareDiseaseDay, read her #WSS story: https://t.co/hVUAs56I07
#WSSwarrior #WSSawareness
Dr. Wendy Jones, Consultant in Clinical Genetics at Great Ormond Street Hospital for Children in London, shared an insightful talk about #WSS for #WSSAwareness day. We thank Dr. Jones for her support!
https://t.co/HBjPFvn2A8
We cannot end #WSSAwareness day without sharing some exciting news. The 2022 International WSS Conference is being planned for October 2022 in Baltimore, Maryland, USA! Stay tuned for more details. We are so excited to see our WSS families! ππ§‘
Happy #WSSAwareness Day! We continue to share videos of our #WSSwarriors and their parents. In this video, Annabel, one of our #WSS Foundation board members, speaks with Steven, a.k.a. Bink, and his mom. The video guest stars Alex, another #WSSwarrior. https://t.co/rUxAKxRTp7
#WSS is a broad spectrum syndrome and not all individuals will be affected in the same way. Today we celebrate #WSSAwareness by sharing some interviews with our #WSSWarriors. In this video, Georgia share her experiences with WSS.
https://t.co/jrNy5apaSL
Last year my youngest daughter Edie was diagnosed with #WSS #WiedemannSteinerSyndrome
Today is #WSSAwareness Day
@WSSwarriorsUK @WSSFoundation
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