Top Tweets for #LetsTalkHD
We’re joining partners across the rare disease community to discuss research, policy, patient care, and the urgent need for treatment pathways that work for small patient populations.
Follow along and join the conversation! #RareDisease #HuntingtonsDisease #LetsTalkHD
Watching "Who Wants to be a Millionaire" and this made me tear up. Miss you, Terry Vaughn. 💙 #LetsTalkHD
#Research Update - @uniQure announces that the high-dosing enrollment will resume for their trial of AMT-130. Read complete letter to the community and press release at https://t.co/pPIJCx4sfp.
#uniQure #clinicaltrial #hope #huntingtonsdisease #letstalkhd #rarediseaes #hdyo
Tune in on Facebook and YouTube on Tuesday, September 27th at 12 p.m. EST. Links to come.
Interested in learning more from Roche? Reach their community letter: https://t.co/DdN096r6ES
#clinicaltrials #research #roche #hdyo #education #raredisease #letstalkhd #empower
Earlier this week, @WaveLifeSci gave an update about SELECT-HD. Their results have been encouraging to expand the 30 & 60 mg cohort and are still advancing their 90 mg cohort.
@EHDN_News @EuroHuntington @RareRevolutionM #clinicaltrials #research #letstalkhd
Stand Up Saturday! Families currently and previously impacted by Juvenile-onset Huntington's disease can now stand up by telling us their experiences through the JOIN-HD Registry! #juvenilehd #pediatric #pediatricraredisease #raredisease #letstalkhd #hdyo #joinhd #hope #support
There have been many updates recently in HD research. Our latest edition of our Research Video Series focuses on the recent @HDBuzzFeed article, Updates from @uniQure_NV's gene therapy. Watch this video for the article highlights. #letstalkhd
https://t.co/TOVY18CLhZ
We hope this allows many more people to access information needed to help support, educate and empower young people and families impacted by HD!
#accessibility #translation #resources #letstalkhd #support #educate #empower #hope #power
@EuroHuntington @hdfcures
Our next #Instagram takeover has started! Meet Joshua. He found out about #Huntingtonsdisease at 15 and is sharing his story about #juvenilehd. Join us all day! @EHDN_News @HDBuzzFeed @neurocrine @SageBiotech @uniQure_NV @Novartis @TevaUSA @WaveLifeSci @PrileniaTx #letstalkhd
It’s happening! Ashley from #imnotdrunklifestyleblog has taken over our Instagram account! Check out her story at HDYOFeed. #letstalkhd #RareDisease @HDBuzzFeed @hdfcures @HuntingtonSG @EHDN_News @HDA_tweeting @Srotberg15 #instagram @RareRevolutionM
Our next #instagram takeover has begun! Meet Charlotte. Head over to HDYOFeed on Instagram to hear her story all day! @HDA_tweeting @Srotberg15 @BJsView @EHDN_News @HDBuzzFeed @uniQure_NV @neurocrine @SageBiotech @TevaUSA @PrileniaTx @Novartis @Roche #letstalkhd
#researchupdate - “[This] is an important milestone, as it provides opportunities to work collaboratively with the FDA to accelerate pridopidine’s development for the treatment of Huntington’s Disease.” @PrileniaTx #letstalkhd #raredisease
Read More: https://t.co/DDhTG9F8x6
![HDYOFeed's tweet photo. #researchupdate - “[This] is an important milestone, as it provides opportunities to work collaboratively with the FDA to accelerate pridopidine’s development for the treatment of Huntington’s Disease.” @PrileniaTx #letstalkhd #raredisease
Read More: https://t.co/DDhTG9F8x6 https://t.co/Zj1yp3NdSx](https://pbs.twimg.com/media/FEfBE06VEBgkxVr.png)
UK Supporters - WE NEED YOU! Our next Breaking Down Barriers is on following young people as they go through Enroll-HD. If you live in the UK with easy access to Birmingham and are willing to share your story via video, email [email protected]. #enrollhd #letstalkhd
#Research Update from @PrileniaTx and @HuntingtonSG. #letstalkhd #clinicaltrials #huntingtonsdisease
https://t.co/yN3eWVYy4h
Welcome Dr Lauren Byrne and Dr Rebecca Mason who are presenting at the @Help4HDI Symposium! Tune in to their #FacebookLive for the live feed. #letstalkhd #juvenilehd
SAVE THE DATE! HDYO Virtual Young Adults Virtual Congress will be March 5-6, 2022! Stay tuned for more details for this interactive and meaningful event that supports young people, all over the world impacted by HD. #HDYOCongress #HuntingtonsDisease #LetsTalkHD
Have you signed up for tomorrow's Staying Connected Online Support Group? People impacted with HD come together to discuss questions, meet others & know they are not alone. YOU MUST REGISTER TO RECEIVE THE LINK! https://t.co/Nzc28wN7lA
#LetsTalkHuntingtons #LetsTalkHD #support
#TopTips - We're continuing our Ambassador Top Tips about how to speak to strangers about HD. Learn Carly's tips. Encourage the conversation to continue. Stay tuned all October! #letstalkhd #October
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