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Thrive w/ Pyruvate Kinase Deficiency Organization
@TwPKDnonprofit
Advocating & raising awareness #pyruvatekinasedeficiency #pkdeficiency #rareanemia #blooddisorder #blooddisease #hemolyticanemia #geneticanemia #anemia #nonprof
ID:1386000429251809280
http://thrivewithpkd.org 24-04-2021 16:54:08
1,0K Tweets
87 Followers
182 Following
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Registration is coming for the 2nd Intl #PKDeficiency Conf. Thanks to sponsors, @AgiosPharmacueticals & Rocket Pharmaceuticals, hotel will be covered for 3 nights for N.A. attendees & 4 nights for Intl attendees. Start shopping 4 flights! π©οΈ
#pyruvatekinasedeficiency #2ndPKDconference
![Thrive w/ Pyruvate Kinase Deficiency Organization (@TwPKDnonprofit) on Twitter photo 2024-03-02 14:01:51 Registration is coming for the 2nd Intl #PKDeficiency Conf. Thanks to sponsors, @AgiosPharmacueticals & @RocketPharma, hotel will be covered for 3 nights for N.A. attendees & 4 nights for Intl attendees. Start shopping 4 flights! π©οΈ #pyruvatekinasedeficiency #2ndPKDconference Registration is coming for the 2nd Intl #PKDeficiency Conf. Thanks to sponsors, @AgiosPharmacueticals & @RocketPharma, hotel will be covered for 3 nights for N.A. attendees & 4 nights for Intl attendees. Start shopping 4 flights! π©οΈ #pyruvatekinasedeficiency #2ndPKDconference](https://pbs.twimg.com/media/GHq65iSW4AANbrW.jpg)
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Time to share your #rarestory ! #Showyourstripes and post how you and your family celebrate #rarediseaseday ! πΈ πΌοΈπ¦
#pkd eficiency #pkd #pyruvatekinasedeficiency
![Thrive w/ Pyruvate Kinase Deficiency Organization (@TwPKDnonprofit) on Twitter photo 2024-02-29 12:01:48 Time to share your #rarestory! #Showyourstripes and post how you and your family celebrate #rarediseaseday! πΈ πΌοΈπ¦ #pkdeficiency #pkd #pyruvatekinasedeficiency Time to share your #rarestory! #Showyourstripes and post how you and your family celebrate #rarediseaseday! πΈ πΌοΈπ¦ #pkdeficiency #pkd #pyruvatekinasedeficiency](https://pbs.twimg.com/media/GHgMPcKWcAAYT-3.jpg)
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Remember, February 29, 2024 is #RareDiseaseDay . Show your support and #ShowYourStripes ! Wear your favorite rare-wear and post it on Feb 29, 2024! π¦
#pkdeficiency #PKD #pyruvatekinasedeficiency
![Thrive w/ Pyruvate Kinase Deficiency Organization (@TwPKDnonprofit) on Twitter photo 2024-02-28 16:03:45 Remember, February 29, 2024 is #RareDiseaseDay. Show your support and #ShowYourStripes! Wear your favorite rare-wear and post it on Feb 29, 2024! π¦ #pkdeficiency #PKD #pyruvatekinasedeficiency Remember, February 29, 2024 is #RareDiseaseDay. Show your support and #ShowYourStripes! Wear your favorite rare-wear and post it on Feb 29, 2024! π¦ #pkdeficiency #PKD #pyruvatekinasedeficiency](https://pbs.twimg.com/media/GHb6BzvW0AEywXQ.jpg)
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Did you know 72% of all #rarediseases are genetic like #pkdeficiency ? #PKD is caused by a recessive PKLR gene that doesn't work properly.
#RareDiseaseDay2024 #pyruvatekinasedeficiency #rareanemia
![Thrive w/ Pyruvate Kinase Deficiency Organization (@TwPKDnonprofit) on Twitter photo 2024-02-28 12:02:00 Did you know 72% of all #rarediseases are genetic like #pkdeficiency? #PKD is caused by a recessive PKLR gene that doesn't work properly. #RareDiseaseDay2024 #pyruvatekinasedeficiency #rareanemia Did you know 72% of all #rarediseases are genetic like #pkdeficiency? #PKD is caused by a recessive PKLR gene that doesn't work properly. #RareDiseaseDay2024 #pyruvatekinasedeficiency #rareanemia](https://pbs.twimg.com/media/GHbCssTWcAAR-Lc.jpg)
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The zebra is the mascot for rare disease patients because, in medicine, zebras represent uncommon answers. 1 in 10 Americans has a rare disease.
π¦π΄π΄π΄π΄π΄π΄π΄π΄π΄
On Feb 29 post a selfie with #ShowYourStripes to share your story!
#PKdeficiency #pyruvatekinasedeficiency
![Thrive w/ Pyruvate Kinase Deficiency Organization (@TwPKDnonprofit) on Twitter photo 2024-02-20 12:01:48 The zebra is the mascot for rare disease patients because, in medicine, zebras represent uncommon answers. 1 in 10 Americans has a rare disease. π¦π΄π΄π΄π΄π΄π΄π΄π΄π΄ On Feb 29 post a selfie with #ShowYourStripes to share your story! #PKdeficiency #pyruvatekinasedeficiency The zebra is the mascot for rare disease patients because, in medicine, zebras represent uncommon answers. 1 in 10 Americans has a rare disease. π¦π΄π΄π΄π΄π΄π΄π΄π΄π΄ On Feb 29 post a selfie with #ShowYourStripes to share your story! #PKdeficiency #pyruvatekinasedeficiency](https://pbs.twimg.com/media/GGx174pXYAAkPZ9.jpg)
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#RareDiseaseDay is just 10 days away! π¦
Looking for ways to #ShowYourStripes in your community? Download our playbooks for tips and tools on how to stripe out your school, work, and neighborhood: bit.ly/48lCgfX
![NORD (@RareDiseases) on Twitter photo 2024-02-19 14:43:05 #RareDiseaseDay is just 10 days away! π¦ Looking for ways to #ShowYourStripes in your community? Download our playbooks for tips and tools on how to stripe out your school, work, and neighborhood: bit.ly/48lCgfX #RareDiseaseDay is just 10 days away! π¦ Looking for ways to #ShowYourStripes in your community? Download our playbooks for tips and tools on how to stripe out your school, work, and neighborhood: bit.ly/48lCgfX](https://pbs.twimg.com/media/GGtRPjJWYAAgxY7.jpg)
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Join in the sock fun for #Rarediseaseday on February 29, 2024!
#pyruvatekinasedeficiency #rareanemia #pkdeficiency #showyourstripes
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We are thrilled to announce the 2nd Intl #PyruvateKinaseDeficiencyConference , July 2024! π This year #PKDF & #ThrivewithPKD are joining forces to unite the community! πͺ
Details on registration coming soon! π
#PKDConference2024 #bridgingliveswithPKD #hemolyticanemia
![Thrive w/ Pyruvate Kinase Deficiency Organization (@TwPKDnonprofit) on Twitter photo 2024-02-18 12:00:59 We are thrilled to announce the 2nd Intl #PyruvateKinaseDeficiencyConference, July 2024! π This year #PKDF & #ThrivewithPKD are joining forces to unite the community! πͺ Details on registration coming soon! π #PKDConference2024 #bridgingliveswithPKD #hemolyticanemia We are thrilled to announce the 2nd Intl #PyruvateKinaseDeficiencyConference, July 2024! π This year #PKDF & #ThrivewithPKD are joining forces to unite the community! πͺ Details on registration coming soon! π #PKDConference2024 #bridgingliveswithPKD #hemolyticanemia](https://pbs.twimg.com/media/GGnikQWXoAAGyXZ.jpg)
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#Pulmonaryhypertension also commonly occurs in people with #pkdeficiency , another #hemolyticanemia .
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Chances are high you know someone affected by #raredisease ! #PKdeficiency affects people of all backgrounds and is thought to have developed as protection against malaria.
#rareanemias #hemolyticanemia #pyruvatekinasedeficiency
![Thrive w/ Pyruvate Kinase Deficiency Organization (@TwPKDnonprofit) on Twitter photo 2024-02-17 12:01:11 Chances are high you know someone affected by #raredisease! #PKdeficiency affects people of all backgrounds and is thought to have developed as protection against malaria. #rareanemias #hemolyticanemia #pyruvatekinasedeficiency Chances are high you know someone affected by #raredisease! #PKdeficiency affects people of all backgrounds and is thought to have developed as protection against malaria. #rareanemias #hemolyticanemia #pyruvatekinasedeficiency](https://pbs.twimg.com/media/GGiZBicXMAAhGLW.jpg)
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NOW THAT'S EMBARRASSING! Correction on the hold the date - Please hold July 14-16, 2024 for the #Pyruvatekinasefamilyconference !!
#pkdeficiency #holdthedate #minneapolis
![Thrive w/ Pyruvate Kinase Deficiency Organization (@TwPKDnonprofit) on Twitter photo 2024-02-12 19:14:07 NOW THAT'S EMBARRASSING! Correction on the hold the date - Please hold July 14-16, 2024 for the #Pyruvatekinasefamilyconference!! #pkdeficiency #holdthedate #minneapolis NOW THAT'S EMBARRASSING! Correction on the hold the date - Please hold July 14-16, 2024 for the #Pyruvatekinasefamilyconference!! #pkdeficiency #holdthedate #minneapolis](https://pbs.twimg.com/media/GGKMKmfXoAAaJPO.jpg)
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If you're planning your summer vacation, remember your #PKdeficiency family is meeting July 12-14, 2024 in Minneapolis, MN. Make it a family event and venture north to #connect , #share , and #learn about living with #pyruvatekinasedeficiency !
#rarebutnotalone #savethedate
![Thrive w/ Pyruvate Kinase Deficiency Organization (@TwPKDnonprofit) on Twitter photo 2024-02-12 17:02:16 If you're planning your summer vacation, remember your #PKdeficiency family is meeting July 12-14, 2024 in Minneapolis, MN. Make it a family event and venture north to #connect, #share, and #learn about living with #pyruvatekinasedeficiency! #rarebutnotalone #savethedate If you're planning your summer vacation, remember your #PKdeficiency family is meeting July 12-14, 2024 in Minneapolis, MN. Make it a family event and venture north to #connect, #share, and #learn about living with #pyruvatekinasedeficiency! #rarebutnotalone #savethedate](https://pbs.twimg.com/media/GGJt_ONWoAA6ZqL.jpg)
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February is #raredisease awareness month & key to #raredisease is equitable access to diagnosis, treatment, & care. The Intl Guidelines for #DiagnosisandTreatmentofPKDeficiency were released in Lancet Hemat: ow.ly/iAsU50QA3CF
#pkdeficiency
![Thrive w/ Pyruvate Kinase Deficiency Organization (@TwPKDnonprofit) on Twitter photo 2024-02-12 12:02:11 February is #rarediseaseawareness month & key to #raredisease is equitable access to diagnosis, treatment, & care. The Intl Guidelines for #DiagnosisandTreatmentofPKDeficiency were released in Lancet Hemat: ow.ly/iAsU50QA3CF #pkdeficiency February is #rarediseaseawareness month & key to #raredisease is equitable access to diagnosis, treatment, & care. The Intl Guidelines for #DiagnosisandTreatmentofPKDeficiency were released in Lancet Hemat: ow.ly/iAsU50QA3CF #pkdeficiency](https://pbs.twimg.com/media/GGIpTQLXQAA_3Ax.jpg)
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One in ten people live with a #raredisease , making it not so unusual after all. Resources to help people cope with #raredisease are more available than ever before. π¦
#pkdeficiency #pyruvatekinasedeficiency #rareanemia
![Thrive w/ Pyruvate Kinase Deficiency Organization (@TwPKDnonprofit) on Twitter photo 2024-02-09 12:02:12 One in ten people live with a #raredisease, making it not so unusual after all. Resources to help people cope with #raredisease are more available than ever before. π¦ #pkdeficiency #pyruvatekinasedeficiency #rareanemia One in ten people live with a #raredisease, making it not so unusual after all. Resources to help people cope with #raredisease are more available than ever before. π¦ #pkdeficiency #pyruvatekinasedeficiency #rareanemia](https://pbs.twimg.com/media/GF5MicBX0AAoKMT.jpg)
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Thrive with PK Deficiency Organization (@Twpkdnonprofit) and Pyruvate Kinase Deficiency Foundation (@2021PKDF) are pleased to announce the 2nd International PK Deficiency Family conference, July 14-16, 2024.
More to come!
#pkdeficiencyconference #livedexperience
![Thrive w/ Pyruvate Kinase Deficiency Organization (@TwPKDnonprofit) on Twitter photo 2024-02-07 12:02:01 Thrive with PK Deficiency Organization (@Twpkdnonprofit) and Pyruvate Kinase Deficiency Foundation (@2021PKDF) are pleased to announce the 2nd International PK Deficiency Family conference, July 14-16, 2024. More to come! #pkdeficiencyconference #livedexperience Thrive with PK Deficiency Organization (@Twpkdnonprofit) and Pyruvate Kinase Deficiency Foundation (@2021PKDF) are pleased to announce the 2nd International PK Deficiency Family conference, July 14-16, 2024. More to come! #pkdeficiencyconference #livedexperience](https://pbs.twimg.com/media/GFu5UG5WUAAPmxu.jpg)