Top Tweets for #CureMPS
2021 Million Dollar Bike Ride- Donation made in memory of Karena Guajardo. Inhttps://support.mpssocietygive.org/MDBR2021 @LuisLGuajardo #CUREmps @MPSSociety
Hi friends please vote for our post-doc Masha Taherzadeh, this beautiful image was taken from one of our research programs.#CUREmps @NSERC_CRSNG @_Acfas #ScienceExposed https://t.co/a7uYhUUjMg
Please all patients and caregivers of a rare disease take this survey! This is serious it will be transformative for our: cost of living, insurance coverage, reimbursement, services, drug approval and much much more. #CUREmps
1/4 If you or someone in your family has a rare disease, we want YOU to take the National Burden of Rare Disease Survey. The EveryLife Foundation for Rare Diseases in collaboration with the rare disease community has worked with health economists to develop the #burdenstudy
In honor of #MPSAwarenessDay we at Phoenix Nest would like to share this lovely video with all of you. #ChaseTheSigns #CUREmps https://t.co/LZxnVZYXHm
Jonah gets his hair cut, isolation style. A tip on diagnosing #sanfilippo is the texture of their hair. It's not smooth, medical professionals call it coarse. Sanfilippo children have lots of hair that looks dry and kinky. #CUREmps Jonah's Just Begun #ZEBRA #UBER-RARE
@Save_Arian @crowngaurav @ManMundra @Pedal_India @BloodDonorsIn Happy Birthday young man! 🦓💜🦓 #CUREmps
The kids have their traveling hats on and we are Orlando-bound 🛫 for the annual MPS Conference! Excited to hang out with MPS families from around the world and hear the latest research and initiatives to #CureMPS!… https://t.co/hbDoqbWY9v
Minions want to help.
If you would like to join them or learn more about Sanfilippo Syndrome, an ultra rare genetic disease go to:
https://t.co/jc46qfHc27 or
https://t.co/YLP1UHtgsR
#Curemps #minions #sanfilipposyndrome
Today is World Sanfilippo Awareness Day.
Sanfilippo Syndrome is an ultrarare genetic disease.
More info:
@CureSanfilippoF
@JJB4CURE
#sanfilippoawarenessday #Curemps
https://t.co/41JQsJl5Wz
@rdmd @RareAdvocates @fdna @Invitae 3/5 @RareAdvocates My favorite resource for keeping up on all rare disease policy making, stay on top of: #NBS legislation, #right2try, #PDUFAVII, #USCIS #IsabelBueso and much much more! #CUREmps
AskBio Acquires Assets from RoverMed BioSciences, Adds Nanotechnology Precision to Delivery of AA... https://t.co/sMgNm7kvAz via @YahooFinance Science keeps getting better and better. #CUREmps
The blog of Jill Wood Co-Founder of Jonah's Just Begun and Phoenix Nest: Control https://t.co/OcWCo7J1Z5 This blog is in memory to Sophie Hamza who lost her life to Sanfilippo Syndrome this past Friday. Sophie was 11, like Jonah she had that same heart stopping smile. #CUREmps
I'm so very proud of this team of scientists from Dr. Pshezhetsky's lab at @ChuSteJustine Warms my heart and makes me breathe a little easier knowing that these guys are here working to save our children's lives. #CUREmps
Thank you Annie Larson and @SenCoryGardner for your time discussing legislation that will help our families with rare diseases. A BIG thank you for introducing the Newborn Screening Saves Lives Act to the Senate! ❤️ #RareAcrossAmerica #CureMPS for #SuperCooper
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