Thrive w/ Pyruvate Kinase Deficiency Organization (@twpkdnonprofit) 's Twitter Profile
Thrive w/ Pyruvate Kinase Deficiency Organization

@twpkdnonprofit

Advocating & raising awareness #pyruvatekinasedeficiency #pkdeficiency #rareanemia #blooddisorder #blooddisease #hemolyticanemia #geneticanemia #anemia #nonprof

ID: 1386000429251809280

linkhttp://thrivewithpkd.org calendar_today24-04-2021 16:54:08

1,1K Tweet

85 Followers

181 Following

Rocket Pharmaceuticals (@rocketpharma) 's Twitter Profile Photo

Recently, #TeamRocket had the honor of engaging with the #PKDeficiency community at #BridgingLivesPKD hosted by Thrive w/ Pyruvate Kinase Deficiency Organization & Pyruvate Kinase Deficiency Foundation. Thanks to everyone who brought this successful event to fruition for the patient and advocacy communities. #PKDConference #PKD

Recently, #TeamRocket had the honor of engaging with the #PKDeficiency community at #BridgingLivesPKD hosted by <a href="/TwPKDnonprofit/">Thrive w/ Pyruvate Kinase Deficiency Organization</a> &amp; <a href="/2021PKDF/">Pyruvate Kinase Deficiency Foundation</a>. Thanks to everyone who brought this successful event to fruition for the patient and advocacy communities.

#PKDConference #PKD
Agios (@agiospharma) 's Twitter Profile Photo

Last week, we enjoyed presenting at Thrive w/ Pyruvate Kinase Deficiency Organization's 2nd International Pyruvate Kinase Deficiency Conference. Our team members discussed how the Peak Registry is seeking to make #pkdeficiency (PKD) data more accessible and shared insights from our Phase 3 ACTIVATE-KidsT study.

Last week, we enjoyed presenting at <a href="/TwPKDnonprofit/">Thrive w/ Pyruvate Kinase Deficiency Organization</a>'s 2nd International Pyruvate Kinase Deficiency Conference. Our team members discussed how the Peak Registry is seeking to make #pkdeficiency (PKD) data more accessible and shared insights from our Phase 3 ACTIVATE-KidsT study.
Thrive w/ Pyruvate Kinase Deficiency Organization (@twpkdnonprofit) 's Twitter Profile Photo

When all that hard work and planning pays off, sponsors and donors come together, and people and families with #PKdeficiency are served, we call that #success! 🥳 Thank you to everyone! Looking forward to #PKDconference2026! #pyruvatekinasedeficiency #rareanemias

When all that hard work and planning pays off, sponsors and donors come together, and people and families with #PKdeficiency are served, we call that #success! 🥳  Thank you to everyone! Looking forward to #PKDconference2026! 

#pyruvatekinasedeficiency #rareanemias
Thrive w/ Pyruvate Kinase Deficiency Organization (@twpkdnonprofit) 's Twitter Profile Photo

#Intheroomwhereithappened, Dr. Grace, Tamara Schryver, & Alejandra Watson discuss the patient & caregiver perspective of how the #pkdguidelines came together. Sponsored by Agios, catch this episode of the podcast ow.ly/58OJ50SNGIS #pkdeficiency #pyruvatekinasedeficiency

#Intheroomwhereithappened, Dr. Grace, Tamara Schryver, &amp; Alejandra Watson discuss the patient &amp; caregiver perspective of how the #pkdguidelines came together. Sponsored by Agios, catch this episode of the podcast 

ow.ly/58OJ50SNGIS

#pkdeficiency #pyruvatekinasedeficiency
Thrive w/ Pyruvate Kinase Deficiency Organization (@twpkdnonprofit) 's Twitter Profile Photo

Thrilled to share results of Agios' ACTIVATE-Kid transfusion-dependent trial: 28% of patients in the mitapivat arm achieved a transfusion reduction compared to 12% in placebo arm; not statistically significant but clinically meaningful. #pkdeficiency investor.agios.com/node/17541/pdf

Thrilled to share results of Agios' ACTIVATE-Kid transfusion-dependent trial: 28% of patients in the mitapivat arm achieved a transfusion reduction compared to 12% in placebo arm; not statistically significant but clinically meaningful. #pkdeficiency
investor.agios.com/node/17541/pdf
Thrive w/ Pyruvate Kinase Deficiency Organization (@twpkdnonprofit) 's Twitter Profile Photo

What do the #redbloodcells look like in an adult with #pkdeficiency who has had her spleen removed? A case-study highlights #RBCs as they undergo #hemolysis and adapt. 🩸 ow.ly/WUkI50SREPR #pyruvatekinasedeficiency #echinocytes #hematology #rareanemias #PKD #echinocyte

What do the #redbloodcells look like in an adult with #pkdeficiency who has had her spleen removed? A case-study highlights #RBCs as they undergo #hemolysis and adapt. 🩸

ow.ly/WUkI50SREPR

#pyruvatekinasedeficiency #echinocytes #hematology #rareanemias #PKD #echinocyte
Blood Academy (@blood_academy) 's Twitter Profile Photo

2/ Pyruvate kinase (PK) is a critical enzyme in the glycolytic pathway. It is primarily responsible for converting phosphoenolpyruvate to pyruvate while generating ATP.

2/ Pyruvate kinase (PK) is a critical enzyme in the glycolytic pathway. It is primarily responsible for converting phosphoenolpyruvate to pyruvate while generating ATP.
Blood Academy (@blood_academy) 's Twitter Profile Photo

3/ PK deficiency, an autosomal recessive genetic disorder, results from mutations in the PKLR gene. This mutation impacts the red cells' energy metabolism, causing ATP shortage, dehydration, and abnormal membrane functions.

Blood Academy (@blood_academy) 's Twitter Profile Photo

4/ The deficiency leads to chronic haemolysis and ineffective erythropoiesis, with symptoms ranging from mild jaundice to severe anaemia and even organ failure.

4/ The deficiency leads to chronic haemolysis and ineffective erythropoiesis, with symptoms ranging from mild jaundice to severe anaemia and even organ failure.
Blood Academy (@blood_academy) 's Twitter Profile Photo

5/ Iron overload, both due to transfusions and increased iron absorption, can cause significant morbidity, including cardiac failure, liver disease, and endocrine dysfunction.

5/ Iron overload, both due to transfusions and increased iron absorption, can cause significant morbidity, including cardiac failure, liver disease, and endocrine dysfunction.
Blood Academy (@blood_academy) 's Twitter Profile Photo

6/ Enhanced levels of 2,3-BPG in patients shift the haemoglobin-oxygen dissociation curve to the right, improving oxygenation in tissues and sometimes aiding anaemia tolerance.

6/ Enhanced levels of 2,3-BPG in patients shift the haemoglobin-oxygen dissociation curve to the right, improving oxygenation in tissues and sometimes aiding anaemia tolerance.
Blood Academy (@blood_academy) 's Twitter Profile Photo

7/ Biochemical testing results for PK levels should be interpreted with caution due to potential false normal readings caused by factors such as increased reticulocytes, recent transfusions, and incomplete removal of platelets and white cells.

7/ Biochemical testing results for PK levels should be interpreted with caution due to potential false normal readings caused by factors such as increased reticulocytes, recent transfusions, and incomplete removal of platelets and white cells.
Blood Academy (@blood_academy) 's Twitter Profile Photo

8/ These complications, alongside the expression of compensatory isoenzymes and kinetically abnormal PK enzymes, can mislead diagnostics. International guidelines* advise against using PK enzyme activity to predict disease severity or progression. *thelancet.com/journals/lanha…

Blood Academy (@blood_academy) 's Twitter Profile Photo

10/ Learn this and more with our morphology course Full-colour textbook | Over 6 hours of video lectures | Assesments and CPD certificates | Free global shipping | 25% off Enrol today 👉 bit.ly/3PR4md5

Thrive w/ Pyruvate Kinase Deficiency Organization (@twpkdnonprofit) 's Twitter Profile Photo

Not sure how to get involved in the PEAK Registry? Here's the cheat sheet link for sign-up and a cheat sheet! peakregistry.com/?publicpage=pa… #pyrvuatekinasedeficiency #pkdeficiency #PKD #rareanemia #peakregistry

Not sure how to get involved in the PEAK Registry? Here's the cheat sheet link for sign-up and a cheat sheet!

peakregistry.com/?publicpage=pa…
#pyrvuatekinasedeficiency #pkdeficiency #PKD #rareanemia #peakregistry
Thrive w/ Pyruvate Kinase Deficiency Organization (@twpkdnonprofit) 's Twitter Profile Photo

The CDC is issuing an alert about increases in human #parvovirusB19 which can lead to serious health risks in people with chronic #hemolyticanemias like #pyruvatekinasedisease. Consider wearing a mask for prevention.😷 emergency.cdc.gov/han/2024/han00… #pkd #rareanemias #pkdeficiency

The CDC is issuing an alert about increases in human #parvovirusB19 which can lead to serious health risks in people with chronic #hemolyticanemias like #pyruvatekinasedisease. Consider wearing a mask for prevention.😷

emergency.cdc.gov/han/2024/han00…
 
#pkd #rareanemias #pkdeficiency