Passionate Global Congenital Anomaly and Rare Disease Advocate | Non-Profit/Public/Organizational Management
The entire rare disease community, and the congenital anomaly community, are at risk. Bad economies = major loss of NGOs, patient support, and research. 1000's of patient organizations will close in 2024 due to lack of funding and volunteers. 100's of new and splinter organizations will be created in a misguided attempt to raise funding and support that will only undermine research, destroy communities, divide funding, and multiply overhead costs. In an election year such as this one when it seems the world is on fire, attention of 1000's of foundations, grantors, volunteers, industry is focused on putting out the same fires.... drowning them in funds and other resources. 90% of funding goes to 25 causes. Read that again. 90% of funding goes to 25 causes. The well known, highly funded organizations are thriving but the 1000's of other causes and patients are neglected. And they will die if we don't diversify funding, collaborate on support, stop competing on any level, and focus on all sources of research and cures. The old ways are now gone. We must pivot. We must fight together for every single patient. Please support our communities. Please read and share. And please support RARE Revolution Magazine. We need them desperately.
As a voice for the community, we always strive to hold a mirror up to the experiences of that community. Our summer issue reflects the ripples of uncertainty being felt across the ecosystem. #Inequitable #Inaccessible #Deprioritised #Marginalised #Isolated #Forgotten? Under-funded Under-represented Under-supported Under-served. Hard to reach but must be heard. Read more here: https://lnkd.in/euuRtZMp #UnderservedCommunities #RareDisease
