@markterris.bsky.social

Today is #RareDiseaseDay Through EB Research Partnership, families, scientists, and supporters are pushing research forward, pioneering progress in EB and helping reshape what’s possible for rare diseases. It’s not a matter of if. It’s a matter of time. 🦋 Learn more: ebresearch.org

The ongoing late payment of DDRB is a disgrace… it should not take months, or years to make the award. Nor should it take 12 weeks to apply the change once agreed. Our doctors deserve to be treated better than this…

a table showing: DDRB Published…                      DDRB paid
March 2015                                    12 months later
March 2016                                    8 months later
March 2017                                    11 months later
July 2018                                          16 months later
July 2020                                          Same month!
July 2021                                          8 months later
July 2022                                          13 months later
July 2023                                          11 months later
July 2024                                          8 months later
May 2025                                         Still waiting…

Strongly recommend watching ‘The Finisher: Jasmin Paris and the Berkeley marathons’. Nice to see some of the best of humanity at a time that the worst is widely on show.