The United Nations convention on rare diseases—A framework for research prioritization
Mohammed Junaid, Jenny Downs, Tudor Groza, Timo Lassmann, Sue Baker, Kaila Stevens, Jake Keeffe, Dylan Gration, Amanda Newell, Jamie Duckers, Gareth Baynam · 2025
Read The United Nations convention on rare diseases—A framework for research prioritization by Mohammed Junaid, Jenny Downs, Tudor Groza, Timo Lassmann, Sue Baker, Kaila Stevens, Jake Keeffe, Dylan Gration, Amanda Newell, Jamie Duckers, Gareth Baynam (2025) in the Tower of Babel, a free online library of public-domain works preserved in clean, searchable text. No sign-up. The full text is served as a plain-text file at a predictable URL, where text is present: https://antarctic-labs.com/tower-of-babel/pmc-12722512.txt.
Description
Mohammed Junaid and ten co-authors turn a United Nations resolution on rare diseases into a plan for research priorities. Taken together, rare diseases affect roughly four to six percent of people worldwide. Families face low awareness, slow diagnosis, weak treatment proof, and poor care access.
In December twenty twenty-one the United Nations adopted its first resolution for people living with rare diseases. The authors read it as a governance tool that links rights to action. They group their advice under data, diagnosis, treatment, and participation. Proposals include shared registries, better data links, and more say for patients. The piece aims to turn broad pledges into steps states can measure.
Catalog record
| CREATOR | Mohammed Junaid, Jenny Downs, Tudor Groza, Timo Lassmann, Sue Baker, Kaila Stevens, Jake Keeffe, Dylan Gration, Amanda Newell, Jamie Duckers, Gareth Baynam |
|---|---|
| YEAR | 2025 |
| COLLECTION | PAPERS |
| FORMAT | TXT |
| FILE SIZE | 22 KB |
| VERSION | 1.0 |
| LICENSE | CC BY 4.0 |
| RIGHTS | CC BY |
| SOURCE | Europe PMC |