NGF Canada

Join the Candian Gaucher community! #raredisease

[Christine @ChristineWNGF]

#EGAmeeting#soexcitedtobepartofthisgreatorganization#representing 43 countries#

[Christine @ChristineWNGF]

Recognizing the millions of people around the globe who are affected by RareDisease#CORD#RDI#Gaucherdisease#Rare

[Christine @ChristineWNGF]

Opinion: Health care is a team sport. Patients and their families need to be on the roster /via @globeandmail https://t.co/ko0EijtBdi

[Christine @ChristineWNGF]

Canada4Rare initiative aims to ‘Save Rare Lives!’ | Canadian Organization for Rare Disorders https://t.co/aLrOF7oEYe

[Christine @ChristineWNGF]

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: https://t.co/l4VLhDKrrt

#raredisease #gaucherdisease

[Christine @ChristineWNGF]

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: https://t.co/l4VLhDKrrt

[Christine @ChristineWNGF]

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 https://t.co/Alq6GAyMXm

[Christine @ChristineWNGF]

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 https://t.co/Alq6GAyMXm

[Christine @ChristineWNGF]

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 https://t.co/Alq6GAyMXm

[Christine @ChristineWNGF]

'Relieved but terrified': Without fighting for care, Ottawa sisters sharing same rare disease wouldn't have lived past 30 https://t.co/anOYQjCaL4 via @citynewsottawa

[Christine @ChristineWNGF]

This is very exciting and promising news for Gaucher patients. We are very hopeful and optimistic

[Christine @ChristineWNGF]

Patient Choice and Empowerment https://t.co/VatyB4CMbe via @YouTube

[CORD @raredisorders]

Thank you for all the support this afternoon! Be sure to visit https://t.co/SY9a2flf0z and send an email to your MP today and tell them to STOP the PMPRB from harming patients #fightforourlives #rarediseases #canpoli

[Christine @ChristineWNGF]

What makes you rare? Swing by Brookfield place and let us know

[Christine @ChristineWNGF]

A big thank you to #Takeda Canada for inviting us to share our journey with rare disease#rare disease day#a great start to an exciting week#grateful

[Christine @ChristineWNGF]

For #GaucherDiseaseAwarenessMonth @NGFCanada will host Understanding Gene Therapy for Gaucher Disease on Oct. 29 at 7:00 p.m. ET. Join in person or via live webcast! Learn more and register here: https://t.co/BwEHYCiol1. Supported by an educational grant from AVROBIO.

[Christine @ChristineWNGF]

For #GaucherDiseaseAwarenessMonth @NGFCanada will host Understanding Gene Therapy for Gaucher Disease on Oct. 29 at 7:00 p.m. ET. Join in person or via live webcast! Learn more and register here: https://t.co/wj0CzSJr6x. Sponsored by AVROBIO

[Christine @ChristineWNGF]

Excited to be among hundreds of amazing advocates #2019GGSUMMIT

[Christine @ChristineWNGF]

Gene Therapy Announcement - National Gaucher Foundation of Canada https://t.co/ec5f2zk7lI