It's #RareDiseaseDay2025 - our community is growing every year, as new genetic disorders are discovered. It's more important than ever for decision-makers to understand what life is like for people like us.
www.linkedin.com/pulse/more-t...
#GRIN1 #GRIA #GRID #GRIK
linkedin.com
More than you can imagine
patient adovcate speech about life affected by a rare genetic disorder
![Image shows the authors' Recommendations regarding research participation [my summary follows]:
1. Researchers should come to meet the community where it is
2. Foster good experiences, build awareness, empower individuals to ask informed questions
3. Qualified and trusted healthcare professionals should tell the community about research studies
4. Provide clear and comprehensive info, making clear what the research involves
5. Keep participants updated about research findings
6. Be transparent about how physical samples will be used
7. Be transparent about what whether test results will be shared for research
8. Emphasise the benefits of research to the wider community as well as to the individual](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:ybtrgghhopv4vgm5ucuwml7f/bafkreifnuc4oap4tzbhjtg3evbhhwory5pghkavcmpytvqtfbvhxjwpeny)