501c3 funding first gene therapy clinical trial for Hunter Syndrome with your help. Save kids from a rare, terminal disease that steals them by their teens.
Joined February 2011
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Project Alive retweeted
We are excited to partner with @GlobalGenes and close out our #RAREontheRoad Leadership Tour, bringing critical education & insights to #raredisease patients, caregivers & other advocates. Join us in Nashville, TN on July 21 for our final stop this year. raretour.org
Project Alive retweeted
Are you a #raredisease patient representative who wants to learn more about research? Apply for the @eurordis Winter School eurordis.org/content/apply-e…
Project Alive retweeted
This would be a HUGE blow to #raredisease patients. Without protection for our pre-existing conditions, we may not be able to access healthcare insurance. I hope healthy people understand that this will likely impact them or their loved ones at some point. #ACA xitter.cf/voxdotcom/status/10048…
The Trump administration believes Obamacare’s preexisting conditions protections are now unconstitutional vox.com/policy-and-politics/…
Project Alive retweeted
We recently found out about Hunter Syndrome (MPS II), a rare genetic disease that affects less than 500 boys in the US.
Today is MPS Awareness Day and @savingcase is helping to raise the funds necessary to get one step closer to a cure. Please consider joining them!
Project Alive retweeted
#15bymay15 Donate $15 to projectalive.org today to push them past their fundraising goal & green light a very important clinical trial! Give boys with Hunter Syndrome a chance to live! Thank you, my friends! @savingcase – at Charlotte, NC
Project Alive retweeted
This is a little about 4yo Sebastian..
if you’d like to help save him... @nbc6 here’s story:
nbcmiami.com/news/local/Sout…
Project Alive retweeted
Small data matters when it comes to #raredisease research. @melissajhogan, CEO of Project Alive and mom to a son with #huntersyndrome explains why: ow.ly/5ZCS30jehUE
Project Alive retweeted
Our friends sharing about #HunterSyndrome on the @TODAYshow - Tax reform impacts children with #rarediseases, including Richard Engel’s son today.com/video/tax-reform-i…
Project Alive retweeted
Sebastian's is a powerful story of one family's journey living with rare disease. Please share Sebastian's story and spread awareness for the Hunter Syndrome Community? @savingcase
news.trend.community/home/se…
Project Alive retweeted
Great news for #raredisease! The FDA is calling for the development of #clinicaltrial networks to better understand #rarediseases as part of a series of initiatives that would be supported by a $400 mil. budget increase. Read more: ow.ly/I46S30iqAbM
Project Alive retweeted
We are excited to announce that the Nelson Boys, Ricky & Kenny will be our next family. They are 2 very precious boys who both suffer from a very rare genetic disorder called Hunter Syndrome also known as MPS II. We are so happy to support this family. Welcome Nelson Family.
Project Alive retweeted
#GeneTherapy has taken a long, winding road, but each year reaches new heights. Three approvals in 2017 and hundreds of promising clinical trials take place in 2018. psmag.com/social-justice/gen…
Project Alive retweeted
Why a lawsuit between rare disease parents seeking a treatment for their daughters and drug companies should offer lessons for other rare disease families @GlobalGenes Rare Daily globalgenes.org/raredaily/ra…
Project Alive retweeted
Want to know if @Shireplc #SHP609works? Check out this #ChristmasMiracle story. xitter.cf/i/moments/945440291053… $SHPG #HunterSyndrome #raredisease
Project Alive retweeted
#DidYouKnow: In the U.S., a disease is defined as "rare" when it affects fewer than 200K Americans at a given time? raredr.com/rare-disease-info…
Project Alive retweeted
#RAREis raising awareness. Through #MPSChallenge & ProjectAlive.org more people now know of Mucopolysaccharidosis II/Hunter Syndrome
Project Alive retweeted
So honored to have been a guest w/ the Hogans on @TheDoctors today to spread awareness of #HunterSyndrome & Project Alive #mps #RareDisease
Project Alive retweeted
Finn’s story is a Vimeo staff pick. Keep the love going with a RT: vimeo.com/226206321
@savingcase #ProjectAlive
Project Alive retweeted
If you could ask for one wish, what would it be? Mine would be a cure for Hunter Syndrome. Pl visit ProjectAlive.org @savingcase