#NotRareEnough - Twitter Hashtag

almost 4 years ago

🙏Thanks to Senior Director of Scientific Initiatives @DacksPenny, Ph.D. for representing AFTD & our community at #RDCADAP 2022. #ThinkFTD #DementiaUnder60 #raredisease #NotRareEnough #endFTD #FutureFreeOfFTD

National Organization for Rare Disorders (NORD)

@RareDiseases

almost 4 years ago

Alexandre Betourne (@CPathInstitute) introduces session, "#RDCADAP: Future Impact" featuring @charleneson (@RARE_X_), Shlok Rohatagi (@CPathInstitute), @Ramona_Walls (@CPathInstitute), Pamela Gavin (@RareDiseases), & @DacksPenny (@AFTDHope). #RareDisease

RareDiseases's tweet photo. Alexandre Betourne (@CPathInstitute) introduces session, "#RDCADAP: Future Impact" featuring @charleneson (@RARE_X_), Shlok Rohatagi (@CPathInstitute), @Ramona_Walls (@CPathInstitute), Pamela Gavin (@RareDiseases), & @DacksPenny (@AFTDHope).

#RareDisease https://t.co/nWlQvpJtdU

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Betsy (Bartosiak) Hennessey @bartobetsy

over 4 years ago

For those of us impacted by 'rare' diseases, they are usually #NotRareEnough, including FTD which took my beautiful mother's life 2 months after her 60th birthday. Today is a good day to educate yourself, be thankful for your health & family, and support where you can. ❤️

The AFTD @AFTDHope

over 4 years ago

📅 Today is #RareDiseaseDay, an annual campaign to increase awareness of the impact of #rarediseases on individuals and families. Learn more and take action to help bring awareness to the fact that #FTD, the most common #DementiaUnder60, is #NotRareEnough: https://t.co/ihqawCiE2l

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The AFTD @AFTDHope

over 4 years ago

📅 Today is #RareDiseaseDay, an annual campaign to increase awareness of the impact of #rarediseases on individuals and families. Learn more and take action to help bring awareness to the fact that #FTD, the most common #DementiaUnder60, is #NotRareEnough: https://t.co/ihqawCiE2l

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#fightback @munstergirrl

over 4 years ago

@RNLilydale its sad but everytime i hear of deaths now, my first thoughts are is it the vaccine? #RIP #NotRareEnough

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CAC2 @cac2org

over 5 years ago

Childhood cancer is considered rare. Today our coalition joins the thousands of other rare diseases to amplify our voices and support each other. Will you join us and Show Us Your Stripes? #rarediseaseday #childhoodcancerawareness #NotRareEnough

cac2org's tweet photo. Childhood cancer is considered rare.

Today our coalition joins the thousands of other rare diseases to amplify our voices and support each other. Will you join us and Show Us Your Stripes?

#rarediseaseday #childhoodcancerawareness #NotRareEnough https://t.co/8KqfiLoJqo

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The AFTD @AFTDHope

over 5 years ago

Today marks #RareDiseaseDay, an annual campaign to increase awareness of rare diseases & their impact on individuals & families. Raising public awareness of FTD is crucial. Learn more & take action today to raise awareness that #FTD is #NotRareEnough: https://t.co/eSsY7zgLaV

AFTDHope's tweet photo. Today marks #RareDiseaseDay, an annual campaign to increase awareness of rare diseases & their impact on individuals & families. Raising public awareness of FTD is crucial. Learn more & take action today to raise awareness that #FTD is #NotRareEnough: https://t.co/eSsY7zgLaV https://t.co/uVW7XLWQPI

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Swifty Foundation @swiftykick

over 5 years ago

Time to Show Your Stripes! Together we are stronger and that is why we are members of CAC2. Today we join thousands of other rare diseases to amplify our voices and support each other. Will you join us and Show Us Your Stripes? #rarediseaseday #notrareenough #mighty4mikey

swiftykick's tweet photo. Time to Show Your Stripes! Together we are stronger and that is why we are members of CAC2. Today we join thousands of other rare diseases to amplify our voices and support each other. Will you join us and Show Us Your Stripes? #rarediseaseday #notrareenough #mighty4mikey https://t.co/tgM4QEKh6q

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Gift from a Child @GiftFromaChild1

over 5 years ago

Get ready to show your stripes! Sunday is #RareCancerDay. Childhood Cancer as a whole and individually is considered rare. For our families, it is not rare enough. Put on your stripes, take a picture, share and build awareness #NotRareEnough #Mighty4Mikey Tag us!

GiftFromaChild1's tweet photo. Get ready to show your stripes! Sunday is #RareCancerDay. Childhood Cancer as a whole and individually is considered rare. For our families, it is not rare enough. Put on your stripes, take a picture, share and build awareness #NotRareEnough #Mighty4Mikey Tag us! https://t.co/1sVTNAKrMo

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Gift from a Child @GiftFromaChild1

over 5 years ago

#worldcancerday2021 Childhood cancer is often considered rare. We say NOT RARE ENOUGH. Today we join our voices with those across the globe to bring advocate for better, kinder, more effective treatments. #notrareenough #mighty4mikey

GiftFromaChild1's tweet photo. #worldcancerday2021 Childhood cancer is often considered rare. We say NOT RARE ENOUGH. Today we join our voices with those across the globe to bring advocate for better, kinder, more effective treatments. #notrareenough #mighty4mikey https://t.co/DZMVGvxtjx

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Swifty Foundation @swiftykick

over 5 years ago

#worldcancerday2021 Childhood cancer is often considered rare. We say NOT RARE ENOUGH. Today we join our voices with those across the globe to bring advocate for better, kinder, more effective treatments. #notrareenough #mighty4mikey

swiftykick's tweet photo. #worldcancerday2021 Childhood cancer is often considered rare. We say NOT RARE ENOUGH. Today we join our voices with those across the globe to bring advocate for better, kinder, more effective treatments. #notrareenough #mighty4mikey https://t.co/VujlifWbiE

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The AFTD @AFTDHope

about 6 years ago

Don't forget to follow us on #Instagram for weekly #MessagesOfHope: https://t.co/470RriOykC #FindHelpShareHope #ThinkFTD #DementiaUnder60 #endFTD #FTD #dementia #youngonsetdementia #earlyonsetdementia #raredisease #NotRareEnough

AFTDHope's tweet photo. Don't forget to follow us on #Instagram for weekly #MessagesOfHope: https://t.co/470RriOykC

#FindHelpShareHope #ThinkFTD #DementiaUnder60 #endFTD #FTD #dementia #youngonsetdementia #earlyonsetdementia #raredisease #NotRareEnough https://t.co/Ja4qwDHOe9

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The AFTD @AFTDHope

over 6 years ago

#DementiaUnder60 #ThinkFTD #NotRareEnough

FTD Registry @EndFTDregistry

over 6 years ago

Frontotemporal degeneration (FTD) is the most common cause of dementia in people under the age of 60. #EndFTD

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The AFTD @AFTDHope

over 6 years ago

On this #RareDiseaseDay we invite you to participate in the last day of our 2020 #WithLove campaign. As a member of @RareDiseases, AFTD seeks to raise awareness that #FTD is #NotRareEnough. Get involved by donating to support AFTD's mission, with love: https://t.co/NaFfEnHeBD

AFTDHope's tweet photo. On this #RareDiseaseDay we invite you to participate in the last day of our 2020 #WithLove campaign. As a member of @RareDiseases, AFTD seeks to raise awareness that #FTD is #NotRareEnough. Get involved by donating to support AFTD's mission, with love: https://t.co/NaFfEnHeBD https://t.co/j18HvPKdKy

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The AFTD @AFTDHope

over 6 years ago

On #RareDiseaseDay, we're sharing an @NBCNews story about #FTD, the illness that transformed Rob Knight from an active, outgoing family man to a nonverbal 55yo living in a nursing facility. Share to raise awareness of FTD, a disease that is #NotRareEnough: https://t.co/zleSMpETUt

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The AFTD @AFTDHope

over 6 years ago

#RareDisease #NotRareEnough #DementiaUnder60

Dr. Nina Silverberg @Nina_BSil

over 6 years ago

Very open piece about different perspectives on "would you want to know?" thank you for sharing your story @NoraSuper1 We are working with the NIA funded ADRCs to improve communication about risk & what genetic and biomarker results mean. @DoctorADDA @Alzheimers_NIH

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Happy Quail @HappyQuailPress

over 6 years ago

@YorkMccrea #NotRareEnough Not at all rare enough...💔

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Fight4Orkambi @fight4orkambi

almost 8 years ago

@nhsCFwarriormum @VertexPharma @MattHancock @cftrust @strawfie @myCFHero @campaign4CFuk @theresa_may @MattHancock do you even see us?? #BorrowMyEyes go and visit a CF ward! Go and speak to CF patients and Doctors, children facing transplant, twenty year olds facing death! Enough is enough #DoTheRightThing #CysticFibrosis the #MostCommonRareDiseaseInUk #NotRareEnough

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Oscar Knox Fund @Wee_Oscar

over 8 years ago

#WorldCancerDay Childhood cancer is rare, but it’s not rare enough. A child dies from neuroblastoma every 10 days in the UK and Ireland 😔 Text OSCAR to 70660 to help us fund vital research in order to save more young lives. #TeamOscarForever 💙💛 #NotRareEnough