Top Tweets for #raredad
When Ben’s son, Gabe, was diagnosed with #BloomSyndrome, a #RareDisease, he began learning how to advocate, ask the right questions, and help his family navigate rare disease as a #RareDad, Rare Hero.
Read Ben’s full #FathersDay Q&A with NORD: https://t.co/CrR81CtHZW
For D. Rolf, being a #RareDad, Rare Hero means fighting for a brighter future for his family and the #FriedreichsAtaxia community.
After two of his daughters were diagnosed with FA, a #RareDisease, he and his family began raising funds for research, contributing more than $1.4M to Friedreich's Ataxia Research Alliance (FARA) @CureFA_org.
Read Rolf's #FathersDay Q&A: https://t.co/fE9JPBL0eH
“Connect.” That’s the advice #RareDad Brian offers other fathers and caregivers navigating a #RareDisease.
Brian’s son Liam lives with #ATRX syndrome — and Brian knows this path can feel isolating. Finding other rare dads made all the difference.
This #FathersDay, we recognize every #RareDadOnAMission to build stronger communities for themselves, their children, and others.
Happy Father’s Day to all the amazing Rare Dads! 💙
You deserve more than just one day of recognition.
Thank you for everything you are and everything you do. 💪💙
#BehindTheMystery #FathersDay #RareDad #RareDiseaseCommunity
#RareDad @Lesmart11659095 has done AMAZING work (at huge personal cost) highlighting the need to expand #NBScreening in Ireland. Who's listening?
#GeneTherapy for #MLD
@padraigosull @rareireland
#RareParentConf2022
Texas Rare Alliance works to unite the stakeholders in the Texas rare disease community. #txrare #raredisease #makerarevisible #neuromusclardisease #geneticdisease #disabiltyisdiversity #raremom #raredad #advocate
Happy Father's Day to all the rad rare dad's out there.
Tag a #RareDad and tell us why they're the coolest.
#RareDisease #Dadvocate
Wishing all our amazing #NCBRS dads around the globe 🌎 a very Happy Father’s Day…
We hope you have an awesome day with your loved ones. #NCBRSRare #FathersDay #FathersDay2022 #RareDad 🧡💚💙
Tomorrow is Father's Day. NTSAD recognizes the strength and enduring love of Dads who are currently caring for an affected child or adult, and of Dads grieving the loss of their child.
#RareDad #FathersDay #RareDisease #NTSAD
With Father's Day coming up this weekend, NTSAD recognizes the strength and enduring love of Dads who are currently caring for an affected child or adult, and of Dads grieving the loss of their child.
#RareDad #FathersDay #RareDisease #NTSAD
With Father's Day coming up this weekend, NTSAD recognizes the strength and enduring love of Dads who are currently caring for an affected child or adult, and of Dads grieving the loss of their child.
#RareDad #FathersDay #RareDisease #NTSAD
At Optio, we don't just work in #RareDisease, our founder and CEO is a #RareDad whose son has battled a #RareCancer. We are proud to #showourstripes🦓
@therarefair Thank you !without platforms such as the @therarefair I wouldn’t have the opportunity to speak about what makes go through. I remember a previous @therarefair where @lukebrosen was talking about being a #raredad which helped give me the confidence to talk about my experiences.
Our Head of Business Development and Patient Advocacy Daniel Lewi has shared his story as a #RAREDad in @RareRevolutionM's#RAREParenting campaign. Open here:
https://t.co/6Y29xoU6EH
@Tay_Sachs
#RAREParenting is tough. Our community is full of amazing parents doing their absolute best but sometimes the Dads can fly under the radar.
Tag a #RareDad in the comments who is awesome or signpost us to some resources you've found helpful #Dads #Parenting #RareDisease #Rare
#RAREParenting is tough. Our community is full of amazing parents doing their absolute best but sometimes the Dads can fly under the radar.
Tag a #RareDad in the comments who is awesome or signpost us to some resources you've found helpful #Dads #Parenting #RareDisease #Rare
This #September is all about #RAREParenting at @RareRevolutionM!
Share your experiences of being a #RAREParent, especially being a #RAREDad!
Thank you to RARE parents for giving everything you have to support and care for your #RAREChildren and loved ones💕
Share your #RAREdad story! Post a picture on your Social Media and share your #RAREdad story by June 21st, on #FathersDay, and be entered to win a $100 dollar gift certificate from your choice of a food delivery service. (Remember to include #RAREdad/#RAREGrandDad in your post)
Happy Father's Day and a special shout out to every #RareDad & #RareGrandDad. Ours make #hemophilia normal teaching the family trade and jobsite lunch too.
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