Mastodawn

28.02.2026
#RareDiseaseDay
#ShowYourStripes
#TagDerSeltenenErkrankungen
#RareDiseaseCommunity
#SeltenVereint
Eine zügige Einführung der ICD-11 würde auch hier sehr helfen! / A swift introduction of the ICD-11 would be very helpful here as well!
Info: https://kopfmahlen.blogspot.com/2025/06/startseite-icd-11-petition-bundestag.html

STARTSEITE ICD-11 / PETITION / Bundestag / WHO - PORTAL

Infoblog zur ICD-11, Gesundheit, Petition

poconnor Jan 23

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

What Is Palynziq? PKU Treatment Explained. AKA PAL, PEGPAL

PAL stands for Phenylalanine Ammonia Lyase, which is a common enzyme in many plant species. The name is similar to PAH because both of them break down phe.... This is why it has been developed as a treatment for people who can’t produce enough PAL — those of us with PKU.

PigPen | Pauline O'Connor

Liz Hiles Jun 12, 2024

Podcasts Highlighting Rare Voices From the Rare Disease Community #RareDiseaseCommunity
https://picnichealth.com/blog/9-podcasts-highlighting-voices-from-the-rare-disease-community

PicnicHealth | 9 Podcasts Highlighting Voices From the Rare Disease Community

Whether you’re already a podcast lover or are just starting to explore the podcast universe, you're in luck: There are a good number of podcasts that highlight voices from the rare disease community!

poconnor May 19, 2024

Good morning @NSPKU Conference. Metabolic dietitian Suzanne Ford kicks us off with a look at the treasure trove of information on the NSPKU webpage.

the research page has open access to relevant studies, while the documents page is a rare resource of helpful information.

Plus, full page copies of the News & Views!

#livingwithpku #pku #NSKUConference #NSPKU2024 #raredisease #rarediseasecommunity #lowprotein

Mark Maguire Mar 31, 2024

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

poconnor Feb 29, 2024

I’m allowed 5g of protein every day with my PKU. Today, I’ll be capturing my PKU meals for Rare Disease Day.
#Breakfast is
- 100g coconut yogurt (1g protein)
- 1 banana (minus a bit which went to #FluffMuppet),
- tea with oat milk (dairy has too much protein for me),
- medicine / supplement is 2 sachets of GMPro Mix-in and 2 phlexy-vit tablets.
#livingwithpku #pku #raredisease #rarediseasecommunity #rarediseasecommunity #rarediseaseadvocacy #rarediseaseday #leapday #leapyear #feb29

Usher Syndrome Ireland Jul 16, 2023

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

MediPaCe Mar 2, 2023

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/