The DESSH Foundation @DESSHCommunity
Advocating for patients and promoting research for DeSanto-Shinawi Syndrome, a rare neurodevelopmental genetic syndrome caused by a mutation of the WAC gene. dessh.org Joined November 2018-
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$21k raised toward $50k! “Joy isn’t in the milestones — it’s in the moments.” 💙 All gifts matched through Dec 31. NEW: You can designate your donation to Clinical Trial Readiness. 👉 Double your impact: dessh.org/donate #JoyInTheMoments #DESSH #ClinicalTrialReadiness
🦃 This Thanksgiving, we’re grateful for the moments that bring us together. Every donation through December 31 will be MATCHED, doubling the impact for DESSH families worldwide. 🔗 dessh.org/donate #Thanksgiving #JoyInTheMoments #DESSHFoundation #Rare #GivingTuesday
💛✨ The DESSH Foundation connects families across languages and continents — and your support makes it happen. Join our global family. 🌍 #JoyInTheMoments #DESSHFoundation dessh.org/donate
🎉 Registration is OPEN for the 2025 DESSH Clinic & Family Conference! 🧬💙 Meet families, clinicians & researchers dedicated to DESSH syndrome. 📅 Deadline: June 13 🔗 desshclinic.com #DESSHClinic #RareDiseaseCommunity
Bidding is going great guns on this fabulous ‘Whimsical Watercolor’ by #DeSSH hero Leo from New Jersey. Visit dessh.org/rareartinfo to view and bid on your favorite pieces to support our cause and help these people living with Rare Diseases #plwrd #RareDiseaseDay
Neurodivergence 🧠 was a super power for Da Vinci, Van Gogh and Warhol 👨🎨 Art brought relief and joy to artist and audience alike ✨ With the same sentiment, let’s leverage the healing power of art this #RareDiseaseDay. dessh.org/rareartinfo
📣 Happy #RareDiseaseDay from all of us at The DESSH Foundation 📣 @desshcommunity #DESSHheroes
🌟 "The world needs all kinds of minds." - Temple Grandin 🌟 Like Temple Grandin says, every mind is unique, and with the right support, each one can thrive. dessh.org/donate #TempleGrandin #UnlockPotential #SupportDESSH #ForeverBrightFuture
The DESSH Foundation is overwhelmed by your generosity! #EveryDonationCounts! If you haven't had a chance to #GIVE, it's never too late to support our mission! dessh.org/donate
DESSH families are floored by the generosity of others today! #EveryDonationCounts #DESSHcommunity
Today, you have the power to make a real difference. Your donation, big or small, helps accelerate research and provide needed resources to DESSH families. Together, we can create lasting change. 💙 ✨ Join us in building a Forever Bright Future! ✨ dessh.org/donate
This Thanksgiving, our hearts are full of gratitude for YOU—our incredible supporters. Thank you for standing by our side and making a difference every day. Wishing you a joyful and blessed Thanksgiving! 🦃🍁 #ThankfulForYou #DESSHCommunity
📢 The Countdown is ON! ⏳ 🌟 1 Week to Giving Tuesday! 🌟 This year, your generosity goes twice as far—thanks to a $20,000 matching challenge! 💥 💛Donate today at dessh.org #GivingTuesday #DESSHFoundation #DoubleYourImpact
📲 Follow The DESSH Foundation on ALL social platforms @DESSHcommunity! ✨ Together, we’re not just talking about change—we’re making it happen. Hit that follow button now and be part of the journey! #DESSHFoundation #CommunityImpact #MakeADifference #FollowUs
"Rare disease impact more people than cancer and aids combined." @GlobalGenes have put together facts to show the impact of living with a rare disease: 👇 ow.ly/5n4X50Qkgwl
Two Weeks to go until #RareDiseaseDay2023... Join the 300 million people living with a #RareDiease and their families around the globe, to raise awareness that targets the general public, healthcare professionals and policymakers. 👇👇👇
Important article at the NYT highlighting the struggle patients, caregivers, and organizations like ours face in the development of treatments for rare genetic diseases. Only hundreds worldwide have been diagnosed with DeSanto-Shinawi syndrome.
Since the technology for bespoke genetic drugs debuted, about two dozen patients have received the infusions — costing as much as $2 million per patient. But hundreds of millions of others live with rare genetic diseases and have no treatment options. nyti.ms/3W9zFR1
@rarediseaseuk @rarediseaseday Thanks for putting this together! If you could please add The DESSH Foundation, a nonprofit dedicated to advancing the scientific research and supporting patients diagnosed with DeSanto-Shinawi Syndrome, a rare genetic disorder. dessh.org/about
❓ Did you know there are over 6000 identified rare diseases worldwide? 👉 Download statistics like this from our website and spread the word to raise awareness for #RareDiseaseDay: cutt.ly/cYCUyc9 #RareDiseaseDay
This past Saturday was International Day of Persons with Disabilities. For #GivingEveryTuesday, let's work toward a disability-inclusive, accessible and sustainable world.
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من اجلك @mnjlk142627
0 Followers 23 Following أم لطفل لمتلازمة نادره هي موجوده بيننا ولكن لايعرفها احد الا القليل هل سمعتم عن {DeSanto-Shinawi syndrome - DESSH} اول حساب عربي يتكلم عن هذه المتلازمه 👍
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