Top Tweets for #RareDads

Beacon for Rare Diseases @RareBeacon

about 5 years ago

Join us at the 4th annual #RareFair, the original virtual event for the #raredisease community. Don’t miss this encore panel of #raredads like ⁦@malezebra20202⁩ as they discuss rare fatherhood. #rarefair2022 #rareunited

therarefair's tweet photo. Join us at the 4th annual #RareFair, the original virtual event for the #raredisease community. Don’t miss this encore panel of #raredads like ⁦@malezebra20202⁩ as they discuss rare fatherhood. #rarefair2022 #rareunited https://t.co/5Ek88ejRL1

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about 5 years ago

Check out these top 10 tips on how to navigate #Parenthood and life with a #RareDisease by #RareDads @malezebra20202 and Adam Johnson Don't forget that you can still submit your #RareParenting experience to join @RareRevolutionM's campaign! https://t.co/w92Q6amnSQ

RareBeacon's tweet photo. Check out these top 10 tips on how to navigate #Parenthood and life with a #RareDisease by #RareDads @malezebra20202 and Adam Johnson

Don't forget that you can still submit your #RareParenting experience to join @RareRevolutionM's campaign!

https://t.co/w92Q6amnSQ https://t.co/0EiKQtWiON

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n-Lorem Foundation @n_lorem

over 5 years ago

Happy #FathersDay to all of the #RareDads who continue to move mountains for children impacted by #rare and #ultrarare diseases. We are inspired by your strength each and every day!

n_lorem's tweet photo. Happy #FathersDay to all of the #RareDads who continue to move mountains for children impacted by #rare and #ultrarare diseases. We are inspired by your strength each and every day! https://t.co/Uw7AhW8yM3

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Mike Graglia 🌻 @JMGraglia

over 5 years ago

An honor to be mentioned alongside these #RareDads. Thanks @DisorderRare.

CURE SYNGAP1 aka SynGAP Research Fund 501(C)(3) @cureSYNGAP1

over 5 years ago

Congrats to our founder @jmgraglia for making it onto this remarkable list from @DisorderRare. Happy Fathers Day to him and all the Dad’s on our Board @pavelg0 @phalliburton @hanspschlecht & Aaron Harding. Aren’t @bobigelow & Daniel DeFabio missing? https://t.co/iq8PiPXDC1

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about 6 years ago

If you missed the #raredads panel at #therarefair, the playback will be available shortly. If are or know a #raredisease dad, please join us next Wednesday at 8pm ET for a virtual rare dads meetup to discuss the #RareDadsCouncil. Details to come in this space!

about 6 years ago

“These kids mean everything to me, mine and the others diagnosed.” -Jonathan Dicks, rare dad #cystinosis #raredisease #therarefair

therarefair's tweet photo. “These kids mean everything to me, mine and the others diagnosed.” -Jonathan Dicks, rare dad #cystinosis #raredisease #therarefair https://t.co/a2unFPnkz8

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about 6 years ago

I think this #RareDads panel is the first one the team have ever seen at a #RareDisease conference. Well done to #TheRareFair and to these amazing Dads for sharing their experiences in “Building a support network” @MyCityMed

RareRevolutionM's tweet photo. I think this #RareDads panel is the first one the team have ever seen at a #RareDisease conference. Well done to #TheRareFair and to these amazing Dads for sharing their experiences in “Building a support network” @MyCityMed https://t.co/wTYB8WlPdE

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Patient Stories @GreyGeneticsPod

about 6 years ago

@mycitymed celebrates #raredads everywhere. Join us at 9:00 AM to hear four rare dads (Bo Govea, @lukebrosen, and Jonathan Dicks, moderated by Jeff Lord) share their stories and learn how they build their support networks. #rarefair2020 #therarefair

therarefair's tweet photo. @mycitymed celebrates #raredads everywhere. Join us at 9:00 AM to hear four rare dads (Bo Govea, @lukebrosen, and Jonathan Dicks, moderated by Jeff Lord) share their stories and learn how they build their support networks. #rarefair2020 #therarefair https://t.co/kpCJ9j4NsS

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Effie Parks

@OnceUponAGene

about 6 years ago

Hear one my my favorite #raredads on @elo81 podcast today. 💜💜💜

about 6 years ago

When Daniel DeFabio's son Lucas was diagnosed with #MenkesDisease, it was one of the worst days of his life. But Daniel turned tragedy into connection when he started @DisorderRare, now The Disorder Channel on @Roku and @amazonfiretv. https://t.co/Ueh6juI4pg

GreyGeneticsPod's tweet photo. When Daniel DeFabio's son Lucas was diagnosed with #MenkesDisease, it was one of the worst days of his life. But Daniel turned tragedy into connection when he started @DisorderRare, now The Disorder Channel on @Roku and @amazonfiretv. https://t.co/Ueh6juI4pg https://t.co/hSxYHfNNEO

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Stephanie Fischer @RarePOV

over 6 years ago

Happy Fathers Day to all the Dads! We appreciate everything you do for us.... even your awful dad dancing. We hope you have a great day today and enjoy your celebrations! From the Rare Revolution team. #RARERevolution #happyfathersday #RAREDads

RareRevolutionM's tweet photo. Happy Fathers Day to all the Dads! We appreciate everything you do for us.... even your awful dad dancing.
We hope you have a great day today and enjoy your celebrations!
From the Rare Revolution team.
#RARERevolution #happyfathersday #RAREDads https://t.co/EUYURj6zWD

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over 7 years ago · Bensalem

.@EveryLifeOrg please include men living with #raredisease who are fathers & advocates (such as @MarcYale & @Rossco006), not just fathers of children with rare disease. We should celebrate all #RareDads this #FathersDay. 🦓

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RARE Foundation @RareAdvocates

over 7 years ago

@EveryLifeOrg (@RareAdvocates parent organization) asks that in honor of #FathersDay and all #raredads, that you please ask your Member of Congress to co-sponsor the #NewbornScreeningSavesLivesAct H.R. 2507 today at https://t.co/eqegxHK4gc

EveryLife Foundation

@EveryLifeOrg

over 7 years ago

Anyone can be a father, but It takes a special person to be a #raredad. In honor of #FathersDay, please ask your Member of Congress to co-sponsor the #NewbornScreeningSavesLives Act H.R. 2507. It only takes a minute. https://t.co/Yxu2AGEBiK @MPSSociety @aphl @RepRoybalAllard

EveryLifeOrg's tweet photo. Anyone can be a father, but It takes a special person to be a #raredad. In honor of #FathersDay, please ask your Member of Congress to co-sponsor the #NewbornScreeningSavesLives Act H.R. 2507. It only takes a minute. https://t.co/Yxu2AGEBiK @MPSSociety @aphl @RepRoybalAllard https://t.co/W3tXLXi5NA

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CHAMP1 Research Foundation @CHAMP1Research

about 8 years ago

@mattmight Matt your such a inspiration to so many in the rare world. You are a game changer, can’t thank you enough for all the help. #CHAMP1ON #RAREDADS

CHAMP1Research's tweet photo. @mattmight Matt your such a inspiration to so many in the rare world. You are a game changer, can’t thank you enough for all the help. #CHAMP1ON #RAREDADS https://t.co/5uOFeIg7Yt

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Action4Alfie @Action4Alfie

over 8 years ago · Leigh

Please take time to read my contribution to this month’s @RareRevolutionM edition. In the article I discuss how @alljoinjack @embracewandl @andysmanclubuk helped me through Alfie’s diagnosis. #RareDads P74-76. 💙

Action4Alfie @Action4Alfie

over 8 years ago

Our team will be taking the rest of the afternoon off for a well earn rest - but you know what to do! Please do the honours in our absence and spread the word. The summer Rare Senses edition is now out!! https://t.co/dimjbPP6fN

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over 8 years ago

Feel free to subscribe to this digital magazine. It features a section celebrating #raredads in which I’ve contributed my story 💙 https://t.co/F6e3A6zduT

Gauchers Association @GauchersA

over 8 years ago

In case you missed it, here's a sneak peak at the front cover of our summer issue, featuring none other than @LostVoiceGuy - the winner of this year's @BGT If you haven't already subscribed, please head to: https://t.co/MzJ1r3CAjE Have a great weekend!

RareRevolutionM's tweet photo. In case you missed it, here's a sneak peak at the front cover of our summer issue, featuring none other than @LostVoiceGuy - the winner of this year's @BGT If you haven't already subscribed, please head to: https://t.co/MzJ1r3CAjE Have a great weekend! https://t.co/MyhPnI6agZ

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over 8 years ago

Any #raredads out there wanting to get involved? https://t.co/WxCrKErc93

over 8 years ago

We would love to hear from the #raredads - whether that's a rare disease patient who'd love to write a piece about how great their father has been with their rare disease, or a dad that's also a rare disease patient. Please get in touch: [email protected]

RareRevolutionM's tweet photo. We would love to hear from the #raredads - whether that's a rare disease patient who'd love to write a piece about how great their father has been with their rare disease, or a dad that's also a rare disease patient. Please get in touch: editor@rarerevolutionmagazine.com https://t.co/4VSTDp94Fp

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