Pitt Hopkins Research Foundation
@PittHopkins
Dedicated to Pitt Hopkins research & treatment, and to creating a network of friends & supporters of those with PTHS. Join us on FB @ https://t.co/f6wLuyrtXx.
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http://www.pitthopkins.org 11-02-2014 02:39:47
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A friendly reminder that early bird pricing for Conference Registration ends this TUESDAY, APRIL 30th! All conference details, including the registration link, can be found here ➡ pitthopkins.org/pthsconference…
🗻💙 #pitthopkins #conference #Denver #family #research
Congratulations, Duncan High School, on setting a new HALO Week record…an amazing $36,750 raised for DHS Special Olympics Team, Pitt Hopkins Research Foundation, Beautiful Day & Dylan Harty! Way to go!!!
✨Registration is officially open for our 2024 Conference! ✨
Check out our conference webpage with all the details: pitthopkins.org/pthsconference…
#PittHopkins #conference #family #research #hope #PHRFDenver2024
Join us in showing “our true colors” while spreading hope & showing the power of community💪💫Want to go beyond wearing blue? Donate to the Pitt Hopkins Research Foundation to help create a path to a brighter future: pitthopkins.org/donate/
#pitthopkins #rarediseaseday
Thank you to #PittHopkins sister Francesca Pauca and Inside Edition for highlighting this beautiful story and bringing awareness to this syndrome! 🥰
youtube.com/watch?v=3ljhWc…
📰 Hot Off the Press! ✨All the latest news from the PHRF -- check it out now! pitthopkins.org/wp-content/upl…
#PittHopkins #newsletter #stayinformed #PHRF
Want to be the first to find out about all things #PittHopkins ?
We share important information about our conference, upcoming trials, research updates, and more via our email list!
JOIN THE PARENT LIST: pitthopkins.org/parent-e-mail-…
JOIN THE GENERAL EMAIL LIST: pitthopkins.org/about-us/join-…
Congrats to the 2023 #MDBR grant awardee, Dr. Brady Maher Brady J Maher Maher Lab, for his research into #PittHopkins ! THANK YOU donors, for making this happen! Details of the grant can be found here: orphandiseasecenter.med.upenn.edu/awarded-grants… #raredisease #research
#PittHopkins Census Count, end of Q3 in 2023...
• 1,263 diagnosed with Pitt Hopkins syndrome
• 41 diagnosed with Pitt Hopkins-Like syndrome (1 or 2)
• 64 different countries
More details and link for parents to add your child: pitthopkins.org/census.
#raredisease #census
We can't thank you enough for your support in 2023, which has been a year of growth for the PHRF!
facebook.com/photo/?fbid=77…
#PittHopkins #research #happynewyear24 #hope #raredisease
Thank you La Jolla Labs Inc. for this great blog summarizing #PittHopkins and for your work to move toward a treatment!
Gene therapy is real—and it’s working. We are thrilled to read initial results of Taysha’s #RettSyndrome gene therapy clinical trial. This gives us so much hope for what the future may hold for gene therapy in #PittHopkins syndrome! 🧬
reverserett.org/news/articles/…
Proud to present my groups latest publication on the ASD risk gene TCF4, out today in molecularpsychiatry Congrats and many thanks to Huei-Ying Chen who led this project, and the many current and former lab members who contributed. nature.com/articles/s4138…@ . .
Reminder: LOIs are due September 15 for MDBR Pilot Grant funding. Details below 👇
There is one $73,473 #PittHopkins pilot grant available. Apply here: bit.ly/MDBR2023RFA. Grants are open to the international research community.
#raredisease #rfa #pennmedmdbr2023
Kicking off Pitt Hopkins Awareness Month with all the latest #PittHopkins news packed into one place -- check out our latest newsletter here ⬇
pitthopkins.org/wp-content/upl…