Top Tweets for #RareGenes
We are both rare genes 🧬 my fiancé Martin is Irish , German, Native and African and I’m Canadian born Polish, French Canadian and East African. #raregenes #exoticmixedcouples
...metabolic bonne diseases. #AccessYourBestCare #XLH #XLHAlliance #Awareness #XLHAwareness #XLinkedHypophosphatemia #Hypophosphatemia #StrongerTogether #Rickets #LivingWithXLH #RareGenes #ChronicDisease #RareDisease Ref: Haffner D, et al. Nat Rev Nephrol 2019;15(7):435-455
The face you make when you are #seizure free for 2 weeks for the first time in over a year 💪
#SCN1B #InvDuDel8p #Epilepsy #EpilepsyKeto #Happy #Rare #UltraRare #WonkyGenes #RareGenes
@frecklegoddess @alisoncassis1 Why do people want to touch red hair? Why is that a need they feel? Also...no...I sont usually have temper but permeating stereotypes and being a creep might make this ginger snap. #RareGenes
ENGLAND CF PATIENTS
—Important—
Uk #cysticfibrosis community in #England
Does this apply to you or someone you know in England?
Please take a look at this IMPORTANT tweet.
Please get in touch if this applies to you
#Kaftrio #raregenes #FDA #EMA
Thanks
👇🏻👇🏻
May I ask for CF community who are f508d + any other, or hv a recently added to FDA list rarer gene, how you are finding gaining access to #Kaftrio? We’ve had varying feedback frm lots but wld love to hear from more people. Please comment below or if you feel more comfortable DM
Pleased to know some folks @NICHQ , and proud to be a Mom of two, with two very different sets of #RareGenes :) Thanks for supporting and celebrating @rarediseaseday on behalf of families like our!
This little hero had an interview yesterday with @hatchingforhealth ❤️😀 he was happy and chatty. The interview should come out next week 👏🏼
https://t.co/V237vm4hY7
#helplucas #savelucas #fightrarediseases #specialneeds #NKH #nkhawareness #nkhresearch #CureForNKH #raregenes
Would it break your Christmas budget to give Lucas $1.00? 🎁 Together we give. Together we can #fightrarediseases 💪🏼
https://t.co/DX4W22kmGi
#helplucas #savelucas #specialneeds #NKH #nkhawareness #nkhresearch #CureForNKH #savenkhbabies #raregenetics #raregenes
Thank you for your support! Each dollar will make a difference in our fight against rare diseases. 🙏❤️
https://t.co/V237vmlTmH
#helplucas #savelucas #fightrarediseases #specialneeds #NKH #nkhawareness #nkhresearch #CureForNKH #savenkhbabies #raregenetics #raregenes
3 in 10 days 🥺 Sophie looks so grown up 🥰💖 #chd #rubinsteintaybisyndrome #raregentics #raregenes #oneofakind #imperfectlyperfect #grownup #nearly3
We need 3 million people to give $1 to end the NKH condition.💥 🙌🏼
Please share and donate $1.00 for NKH 👊🏼
#savenkhbabies #fightrarediseases #nkhawareness #nkhresearch #raregenetics #raregenes #genetherapy #savelucas #giveback
It’s #CHAMP1Tuesday!!! Our amazing #CHAMP is Lily. Lily’s is 22 months old and loves to cuddle and laugh.
To learn more about CHAMP1 go to https://t.co/DIjOteViqW
#CHAMP1 #CHAMP1on #YearofOurChamps #rarewarrior #raregenes #donate #nonprofit
#CHAMP1genemutation #findacure
#CHAMP1Tuesday!! Our beautiful #CHAMP1ON this week is Hope! Hope is a sweet, fun, funny, joyful girl! She loves life and she love people!
If you want to learn more about CHAMP1 to https://t.co/DIjOteViqW
#CHAMP1 #CHAMP1on #YearofOurChamps #rarewarrior #raregenes #donate
@hankgreen Do a video on why hypermobility can be a Very Bad Thing? Bonus points if you mention EDS! #zebrastrong #raregenes #EhlersDanlosSyndrome #heds #hypermobility
This is Patricia (@ArcanOrg) #CelebratingWomen (Profile 688)
#rarechromo #sewsensory #busymumlife #raregenes #arcan #women https://t.co/zheuhTmV5P
This is Patricia (@ArcanOrg). She creates connections, educates and works with families towards a better future for those affected by rare chromosome conditions #CelebratingWomen
#RareDiseaseDay #raregenes @WellChildFams Tuesday 28th February @CerebraUK wear your jeans in support @TyGwynSchool
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