Below is a “framework of ambitions” for those with rare diseases which appeared on Rare Disease Day 2024 (see link below for source).
- Helping patients getting a final diagnosis faster
- Increasing awareness of rare diseases among healthcare professionals
- Better coordination of care
- Improved access to specialised care, treatments and drugs
Simply put and yet comprehensive enough for all that is needed by rare disease patients for necessary activity to be built around them.
And the same can be no less said for aHUS. The aHUS community and Global Action on this website has voiced ambitions for aHUS-
- A Rapid aHUS diagnosis of 7 days or less for more patients
- Greater doctor awareness of aHUS and TMA
- Multidisciplinary care for aHUS from entry to specialist care
- Access to clinically effective aHUS treatments and drugs.
In the rare disease world these are ambitions for the next five years.
Is that a challenge that can be met for aHUS too?
From England Rare Disease Report on 29 February 2014
Article No. 654
