In September last year a group of aHUS patients and parent/carers met with FDA and told them about aHUS.
A summary report about what happened at the meeting has now appeared on FDA’s website.
Use the FDA website link below and read the report. It’s about a five to ten minute read excluding the appendices!
There was a limited amount of time to tell the FDA audience about aHUS , getting it and living with it is like ,as well as the challenges and opportunities patients face in the rest of this decade. Embracing the past, the present and future of aHUS .’
No mean task in just over an hour!
It is amazing though what a group of aHUS people working together can achieve.
It is also amazing how many hours of planning and rehearsal it took the group from March to September to produce something as comprehensive and detailed to make every minute of the time they had count.
There is much to learn about aHUS in this Report. The spectrum of encounters and endings for those now living with it will resonate with those have been through it whether as patient or carer.
In the USA there is much to be optimistic about and that optimism can ripple out around the world with greater precision of treatment and better health outcomes for all.
Many of the patient led FDA patient listening sessions are hosted by patient groups in a much less fortunate position than aHUS patients are. They are desperately seeking hope and help from FDA
The US aHUS Patient Advisory Group formed for this task had a different message and were able to acknowledge the good that FDA had done so far and for them to see what is left to do.
So well done Alyssa, Dave, Heather, James , Taylor and not forgetting Debbie. You put in quite a shift on this project for aHUS
As for the author he could not have imagined, when this week last year he acted on a call in FDA’s newsletter for patient groups to lead a listening session for FDA about their disease and in doing so something like the US aHUS PAG was possible and it would turn out to be so successful.
But it was.
Something different has been tried this year to raise awareness of aHUS. It involved the Food & Drugs Administration , the FDA, in the USA. An advocacy partnership, called the…
Article No. 632