Top Tweets for #WeekInRARE
As seen at #WeekInRARE, Jeff Levenson’s film “Life Through A Lens,” tells of a Hollywood photographer whose “life through a lens” gets turned upside down after he is diagnosed with a rare, debilitating genetic disease, APBD. 🎥 🌟 Watch this film now!
https://t.co/FnF8jQhduj
We are honored to have participated in @GlobalGenes: Week in Rare! Hearing the latest insights and innovations from across the rare disease space has only strengthened our commitment to pushing the boundaries of research and advocacy. Collaboration is key. #WeekinRARE
@S_Searchlight had a great time at #WeekInRARE! 🌐 We connected w/new & returning friends at our booth. 🎤 Erica Jones moderated a panel on event planning. 🧬 Drs. Chung & Foss-Fieg spoke on data strategies. 🏆 Dr. Chung was honored w/ the RARE Champion in Health Equity Award.
APBDRF's Co-President, Jeff Levenson, DDS, Ronete Levenson and Corey Hacker an APBD volunteer and pediatric nurse, attended the @GlobalGenes Week in Rare Conference, in Kansas City, Missouri, on Sept. 26-28.
#APBD #GlobalGenes #WeekinRare
As seen at #WeekInRARE, our Event Planning Toolkit is LIVE! Global Genes partnered with Simons Searchlight to bring you the ultimate toolkit companion. Access this toolkit now! 📝
https://t.co/PgWSyw0Pe4
This past week I spent an incredible time at @GlobalGenes’ #WeekInRARE! It was all that I had hoped for and more. I had the pleasure to reconnect with familiar faces, meet new rare #ChangeMakers and lend my voice to the global space of #rare.
Read more: https://t.co/WEKEtt6Gtw
WashU was honored to attend Global Genes #weekinrare in Kansas City, MO, where hope, patient advocacy, and action unite.
Ready to start the last day of #WeekInRARE @GlobalGenes with the #HealthEquityForum to discuss community engagement and patient engagement in #RareDiseases Happy to talk about our work with @ReMexER1 and @CEPCAL_LATAM to improve access to diagnostics in Mexico & Latin America
Global Genes is pleased to announce the winners of our 2024 RARE Champions of Hope! See below to read more about each individual and their background. Thank you for all of your incredible work in the rare disease community! 🏆✨️ #WeekInRARE #COH
https://t.co/Kzb2HeCjUY
Live from Kansas City, our Noah Siedman has updates from the @GlobalGenes RARE Advocacy Summit, where he joined the Rare Siblings panel earlier today. Stay tuned for a full report from Noah in next week’s newsletter!
Join our email list: https://t.co/tzWXUzW2mK
#WeekInRARE
Day 2 of Week in RARE has, yet again, been filled with inspiration and powerful messaging! We can't wait to see what resources and valuable information our speakers have to share this afternoon! 🦓🙌 #WeekInRARE #RAREAdvocacySummit
#WeekInRare: Vera Luxner, RDA Director of Advocacy Relations, speaks with @LaraBloom, President & CEO of @TheEDSociety, about building & sustaining non-profits in the #RareDisease space, & supporting health professionals.
Watch the full recap: https://t.co/qDpNbffXpz
@GlobalGenes
"Having a brother with a rare disease created a bond within the family that can't be explained. We are so thankful and proud of who we are because of it." - Matt Flesch #RareDiseaseSibling #WeekInRare @GlobalGenes
“You don’t have to advocate alone, bring your community with you.” - James Griffin
T2: Empowering
Advocacy: Federal, State & Patient Insights. @GlobalGenes
#weekinrare #rarehealthyequity #raresummit #ggsummit
"It was really scary when the adults didn't have the answers to my questions about my sibling." -Noah Siedman #Sanfilippo #RareDiseaseSiblings #WeekInRare @GlobalGenes
"I helped speak for my sister when she was in pain and others didn't understand. I'm still speaking for her even though she isn't here physically anymore and she continues to make me brave." - Felix Townsend #RareDiseaseSibling #CureBlau
#WeekInRare @GlobalGenes
"siblings are really good observers. We spend a lot of time looking at our parents and siblings and seeing the needs. We are experts on taking action on those needs and observations." - Noah Siedman, #rarediseaesiblings
@GlobalGenes #WeekInRARE
& that's a wrap on Day 1 of Week in RARE! Whether in-person or virtual, we're so glad to have had a great day with our awesome speakers, moderators, exhibitors, and more! 🎤🎉 #WeekInRARE #RAREAdvocacySummit
We're happy to be at @GlobalGenes #WeekInRARE🦓! Thank You to @RareDisease_Adv
for capturing the journey of our Board Member & #SickleCell Warrior, Maurice. Stories Are POWERFUL. As Maurice says, "Sickle Cell is a part of me, not all of me". Watch below.
https://t.co/loBLN6pAid
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