Top Tweets for #LetsTalkRare
In a new episode, of the #LetsTalkRare podcast, Citius CEO Leonard Mazur discusses the groundbreaking work in rare disease treatment, specifically the approval of LYMPHIR™ for #CTCL. Tune in here: https://t.co/HMfcKeV42M $CTXR #Biopharma @Partners4A
Remember that starting today #RareDiseaseDay2022 & for the next 2 months @ElsevierConnect will have freely available content related to #RareDiseases including some free chapters from our #GenomicsOfRareDiseases book @rarediseaseday #LetsTalkRare #RareDiseaseDay
In honor of #RareDiseaseDay @ElsevierConnect has made some content freely available to educate & raise awareness on #RareDiseases, including selected chapters from our book #GenomicsOfRareDiseases for 2 months from Feb28! Check the available content here:
https://t.co/2zqOQwFJlJ
Have questions related to #genomics #raredisease #undiagnosed ? #letstalkrare with @NHGRI_Director ! Register for our upcoming lecture on March 14th:
https://t.co/H0D3SfZIKe
"Being tossed between specialists like a hot potato because you don't really fit in any 'box' is not only time consuming, but disheartening." Kara, PEER member #rarediseasetruth #letstalkrare #undiagnosed #rarediseaseday2022
I am excited to join @DisorderRare and @OnceUponAGene for a Rare and Relatable Rare Disease Day on @discord! Nothing is off limits (for me 😋) #LetsTalkRare! Join us to discuss all things RARE and RELATABLE! #RareDiseaseDay
#RareDiseaseTruth: A common coping mechanism to navigate #RareDisease life is to see it as a “special” characteristic or “unique” experience. It’s NOT to force false positivity. It’s a nuanced & imperfect tool to manage things beyond comprehension. #RareDiseaseDay #LetsTalkRare
@AftrTheShock This explanation is everything! I see a webinar opportunity here @EveryoneIsWe. We didn't understand this in the beginning - because nothing was explained to us. We had hospice - who were amazing - and conversations about funeral and burial until 7 months old. #LetsTalkRare
@EMoriartyWade @TerriEllsworth @NeenaNizar @BarbyIngle @MelissaSkolnik @Primary_Immune @Srotberg15 @liveliferare @RareCandace @RarePOV @mike_mitt @rarelikeher @isaacfoundation @scrufton73 @Ataxia_and_Me I'm sad that I missed it but #LetsTalkRare!
@rarelikeher This! I had a conversation earlier today about the importance of dealing with emotions. I advocate "like a Mother" and I'm so grateful for Elijah's life but I [still] grieve all that he hasn't and may never do or experience. #LetsTalkRare #RareDiseaseTruth
@GillianHSapia @mike_mitt @myTomorrows @scrufton73 @cathsmstratton @malezebra20202 Thanks for joining in @GillianHSapia! #LetsTalkRare
@GillianHSapia @mike_mitt @myTomorrows @scrufton73 @cathsmstratton @malezebra20202 That’s such a great point @GillianHSapia. #LetsTalkRare
@mike_mitt @scrufton73 @cathsmstratton @myTomorrows @malezebra20202 This is so awesome that you do this! 🦓 💪 #LetsTalkRare
@EMoriartyWade @scrufton73 @cathsmstratton @myTomorrows Better late than never ? Ha. Friday. #LetsTalkRare
@EMoriartyWade Great points, Erin! I'd add that in addition to all the medical, financial, caregiving needs, etc., most families impacted by a #RareDisease also must take on the role of advocate & educator, because of the lack of awareness of these diseases. #LetsTalkRare
@mike_mitt @scrufton73 @cathsmstratton @myTomorrows @mike_mitt it’s so great to see you! Thanks for dropping in to share your #RareDisease wisdom! #LetsTalkRare
@scrufton73 @cathsmstratton @myTomorrows @EMoriartyWade
#LetsTalkRare Here but late! I wish people knew that #RareDiseases don't always go away w/a treatment or a possible "cure". They can essentially go dormant. I wish people knew that we are different as adults than when we were as #Pediatrics patients.
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