On Friday 20 November, from 14:00 to 15:30 UTC, the PaLaDIn consortium hosts a free public webinar for rare disease communities, online via Microsoft Teams. Project Mercury is pointing our network to it, and we hope to see a good number of FSHD patient advocate leaders in the room.
The session is called “Learning from PaLaDIn: A webinar for Rare Disease Communities”. The title says what it is for. PaLaDIn is building data infrastructure and clinical trial tools for neuromuscular disease, and this webinar opens that work up to communities well beyond neuromuscular disease, so that others can take what is useful and adapt it.
Registration is open and still possible: register here.
Why we are flagging a webinar that is not (just) about FSHD
Rare disease communities spend a lot of effort building things that already exist somewhere else. A registry data set, a trial site onboarding guide, a way of explaining a clinical trial to families, a disease model a payer will accept. Each community builds its own, often from scratch, often with one or two people doing the work in their spare time.
Project Mercury was set up on the opposite assumption. Tools get built once, across countries, and then shared. That is why our trial site readiness toolkit was published openly rather than kept inside the network, and it is why the transition of Project Mercury’s assets into the World FSHD Alliance matters to us: someone has to keep these resources alive after a project ends.
A webinar that invites other rare disease communities to look at what PaLaDIn has built, ask hard questions about it and take what fits is the same logic, one level up. We are interested as a community that has something to contribute, and equally as a community with a lot still to learn.
What the FSHD community brings to it
In March 2026, FSHD Europe announced its collaboration with TREAT-NMD and the PaLaDIn consortium to develop an FSHD disease model for health technology assessment (announcement). That work runs alongside the FSHD European Trial Network and sits inside Project Mercury’s wider patient access workstream:
- Patient journey mapping, from symptom onset through diagnosis, care and treatment, with four countries selected for in-depth mapping: France, Italy, Belgium and the Netherlands
- A patient support toolkit, developed with patient organizations rather than for them, so that each country can adapt the material to its own language and health system
- An evidence generation and HTA toolkit, with a multi-stakeholder advisory board bringing together patient representatives, healthcare professionals, HTA experts and industry
This is work in progress. The mapping is still running, the toolkit is in draft, and the disease model is being built. It is also not built for FSHD alone. The structure is meant to be picked up and adapted by other rare disease communities.
Please share the invitation with the organizations and clinicians you work with.