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Pompe.Community
Приєднався 31 січ 2024
The Pompe.Community is a town square for everyone with an interest in Pompe Disease. Its built on the hypothesis that a hub for all things #Pompe is of service to the health of the ecosystem.
This town square is for everyone and anyone, so whether you’re a newly diagnosed or experienced individual/family, an advocacy org leader, a student, a researcher, a drug developer, etc… this community is for you.
Pompe.community is architected by the Pompe Consortium (pompeconsortium.org) with support from Global Genes (globalgenes.org).
This town square is for everyone and anyone, so whether you’re a newly diagnosed or experienced individual/family, an advocacy org leader, a student, a researcher, a drug developer, etc… this community is for you.
Pompe.community is architected by the Pompe Consortium (pompeconsortium.org) with support from Global Genes (globalgenes.org).
Pompe Community Open Meeting 002_2024 JUN 26
Recording of Pompe.Community Meeting 002 from 26 Jun 2024.
• Stay up to date: pompe.community/
• Get Involved: pompeconsortium.org/
Participate in the Data Collection Program:
• rare-x.org/pompe/ (for contributors of data)
• rare-x.org/researchers-access/ (for users of data)
• questions? info@pompe.community & rarexsupport@globalgenes.com
Partner Links:
• globalgenes.org/
• rare-x.org/
Socials:
• Facebook: Pompe.Community
• Instagram: pompe.community
• Twitter: x.com/pompecommunity
• Linkedin: www.linkedin.com/company/pompe-community/
• UA-cam: www.youtube.com/@Pompe.Community
Tags:
@GlobalGenesProject @rare-x6604
• Stay up to date: pompe.community/
• Get Involved: pompeconsortium.org/
Participate in the Data Collection Program:
• rare-x.org/pompe/ (for contributors of data)
• rare-x.org/researchers-access/ (for users of data)
• questions? info@pompe.community & rarexsupport@globalgenes.com
Partner Links:
• globalgenes.org/
• rare-x.org/
Socials:
• Facebook: Pompe.Community
• Instagram: pompe.community
• Twitter: x.com/pompecommunity
• Linkedin: www.linkedin.com/company/pompe-community/
• UA-cam: www.youtube.com/@Pompe.Community
Tags:
@GlobalGenesProject @rare-x6604
Переглядів: 91
Відео
Pompe Community Open Meeting 001_2024 FEB 21
Переглядів 1216 місяців тому
Recording of Pompe.Community Meeting 001 from 21 Feb 2024. • Stay up to date: pompe.community/ • Get Involved: pompeconsortium.org/ Reference links: • Historical account of scientific advances and community driven progress in Pompe Disease: pompestory.blogspot.com/ • Updated Epidemiology of Pompe Disease: DOI: 10.3389/fped.2023.1221140 • Listing of clinical trials: clinicaltrials.gov/ Partner L...