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#rareasone

Posts tagged as #rareasone on Instagram

7 Posts

Help NBS apply!  Follow the link in profile. #rareasone #endnf2  @chanzuckerberginitiative. Also find the initiative on fb and comment to drive support!
“All of a sudden the life you thought you were going to have, is probably going to be significantly different. “If you’re called to do this, you have to accept that your child may not benefit from the work that you do.” - #rareasone  Very true words.  @chanzuckerberginitiative
So inspired by the growing number of rare disease patients and their families who are pushing the boundaries on research. 💪I know firsthand the impact of living with a rare disease - I was diagnosed with Sjogren's syndrome in 2011 but had experienced debilitating symptoms for a while that affected all aspects of my life. The @ChanZuckerbergInitiative's new #rareasone Project aims to strengthen the effort of patient-led groups to accelerate research and drive progress in the fight against rare disease. Learn more at RareAsOne.org
Thank you Mark Zuckerberg and Priscilla Chan for your support in the fight against rare diseases and featuring MLD fighter Calliope and her Mom, Maria of the @calliopejoyfoundation . #fmld #runovermld  #repost @chanzuckerberginitiative with @get_repost ・・・ Rare disease is anything but rare— 400 million people are living with a rare disease and the majority don’t have approved treatment options, let alone a cure. The new #rareasone Project will support patients to accelerate research and drive progress against their rare diseases. Learn more at RareAsOne.org  #raredisease #science #rarediseaseawareness #clinicalresearch
Incredibly proud to stand alongside powerhouse rare disease advocates in "Rare As One Project"–@chanzuckerberginitiative's brand new program to partner with the rare disease community to lower the barriers to patient-led research and push the boundaries to drive research for #raredisease.⁣⁣ ⁣⁣ We are so honored that @emilysentourage is one of the featured stories representing the pioneering role that patient and family-led research organizations are playing in ushering in this new era of research for rare disease and beyond.⁣⁣ ⁣ Watch the announcement video featuring EE & Learn more about the #rareasone initiative >> link in bio!!⁣⁣ ⁣⁣ #chanzuckerberg #cziscience #raredisease #curecf#nonsensemutations #emilysentourage #breethe #beatcf #cysticfibrosis#cfawareness
So inspired by the growing number of rare disease patients and their families who are pushing the boundaries on research. 💪🏾 I know firsthand the impact of living with a rare disease — I was diagnosed with Sjogren's syndrome in 2011 but had experienced debilitating symptoms for a while that affected all aspects of my life.  The @ChanZuckerbergInitiative’s new #rareasone Project aims to strengthen the efforts of patient-led groups to accelerate research and drive progress in the fight against rare diseases. Learn more at RareAsOne.org
Rare disease is anything but rare— 400 million people are living with a rare disease and the majority don’t have approved treatment options, let alone a cure. The new #rareasone Project will support patients to accelerate research and drive progress against their rare diseases. Learn more at RareAsOne.org  #raredisease #science #rarediseaseawareness #clinicalresearch