#rarediseasecommunity — Public Fediverse posts

What is Palynziq? And why does it have so many names?

PAL. PEG-PAL. Pegvaliase. Palynziq.
If you’ve ever felt confused by PKU treatment names — you’re not alone. They all describe the same enzyme-based treatment, just from different angles.

I’ve updated my blog to explain it in plain language:
💚 what the treatment is
💚 how it works
💚 where it’s available (and where it isn’t)

https://www.pigpen.page/what-is-palynziq/

#PKU #LivingWithPKU #RareDiseaseCommunity #PatientInfo #Phenylketonuria

Annual greetings to those celebrating Easter on this day but have dietary restrictions regarding chocolate. Hope you had a good day and satisfied your sweet tooth in the way that suits you.🥚🐣 #DietaryRestriction #RareDisease #RareDiseaseCommunity #DairyFree #PKU #PKUAwareness #Mastodaoine

Hello 👋 Just checking, do we have an Rare Disease community here on Mastodon?
#RareDisease #RareDiseaseIreland #RareDiseaseCommunity #UsherSyndrome

Leveraging existing #PatientGroups and networks is key to finding #RareDisease patients to engage in medicines R&D says Inês Alves from ANDO Portugal.

➡️ Read more about how to overcome challenges to #PatientEngagement in the #RareDiseaseCommunity: https://medipace.com/2023/02/28/raredisease-community/

"What we need is a #PublicPrivatePartnership approach, because the current drug development model does not work in the case of #UltraRareDiseases"

➡️See Nick Sireau's full interview:
https://www.youtube.com/watch?v=RKzwBmUYKF4

➡️Read the full article about overcoming challenges in #PatientEngagement in the #RareDiseaseCommunity: https://medipace.com/2023/02/28/raredisease-community/

#PatientEngagement #RareDiseaseDay