Christine
@ChristineWNGFTweets by Christine White, President. #raredisease @NGFCanada
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Recognizing the millions of people around the globe who are affected by RareDisease#CORD#RDI#Gaucherdisease#Rare
We're pleased to share an opinion piece from @bcrittenden, Executive Director of @pompecanada In this piece Brad advocates for Canada-wide adoption of #newbornscreening for infantile-onset #pompe, a rare and potentially fatal #neuromusculardisorder. patientvoice.io/stories/opinio…
🎂Celebrating Canada's Rare Disease Community In the video: @Durhane and CORD Board Members Cathy Evanochko @TSCanadaST, Christine White @NGFCanada #Canada4Rare
Ottawa to spend $1.5 billion to improve access to drugs for rare diseases cp24.com/lifestyle/otta… via @cp24
Retweet if you agree that Ontario needs to end the wage suppression of nurses when hospital shutdowns are occurring due to a shortage of nurses. #RepealBill124
Opinion: Health care is a team sport. Patients and their families need to be on the roster /via @globeandmail theglobeandmail.com/opinion/articl…
Canada4Rare initiative aims to ‘Save Rare Lives!’ | Canadian Organization for Rare Disorders raredisorders.ca/canada4rare-in…
How can @Zamplo_app help individuals living with Gaucher? Zamplo allows individuals to keep track of all their health data virtually! To learn more about Zamplo, visit @Zamplo_app To get started on Zamplo, sign up here: app.zamplo.org/signup #raredisease #gaucherdisease
The National Gaucher Foundation of Canada and @Zamplo_app are teaming up to connect individuals living with Gaucher to Zamplo, a tool they can use to manage their condition. Together, we will raise awareness for Gaucher disease. Get started on Zamplo: app.zamplo.org/signup
Living with Gaucher? Over the age of 18? Have access to internet? Good news! There is a new global clinical study that you can be a part of. The G.R.I.T Study will look for better ways to manage virtual care for patients. To learn more, visit magiccalgary.ca/grit/
Are you or a loved one living with Gaucher? There is a new clinical trial for managing Gaucher! In the first ever global app-based study individuals will use the @Zamplo_app app to track, manage, and analyze their health. Want to learn more? Visit magiccalgary.ca/grit/
Have you heard about the first-ever global clinical trial that uses a digital app? The M.A.G.I.C clinic focuses on rare genetic diseases like Gaucher, and are currently conducting the G.R.I.T Study. Want to know more about the G.R.I.T Study? Visit magiccalgary.ca/grit/
'Relieved but terrified': Without fighting for care, Ottawa sisters sharing same rare disease wouldn't have lived past 30 ottawa.citynews.ca/local-news/rel… via @citynewsottawa
#RareDisease Gaucher disease is an autosomal recessive genetic condition. Symptoms can appear at any age, but are usually first noticed in childhood or adolescence. Learn more: gauchercanada.ca/about-gaucher/… #RareButNotAlone @NGFCanada
This is very exciting and promising news for Gaucher patients. We are very hopeful and optimistic
Today we reported that the first patient in our Phase 1/2 clinical trial in #Gaucher disease has been dosed. The second patient in our Phase 1/2 clinical trial in #cystinosis has also been dosed with our investigational lentiviral gene therapy. Details: bit.ly/31QJb1V
Patient Choice and Empowerment youtu.be/Wo0q5iOg30I via @YouTube
This week, @CdnFabry and @PompeCanada are co-hosting a virtual discussion on ways for patients to stay healthy in the midst of the COVID-19 outbreak, including people with #FabryDisease and #PompeDisease. Learn more:
The CFA is launching a Virtual Education Series on how to stay healthy in the midst of COVID-19. We’re all in this together - let’s do our best to keep ourselves and each other healthy. Join in March 26th to hear… instagram.com/p/B97USk1A8bm/…
Thank you for all the support this afternoon! Be sure to visit fightforourlives.ca and send an email to your MP today and tell them to STOP the PMPRB from harming patients #fightforourlives #rarediseases #canpoli
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