As another year turns in the aHUS world it is perhaps a time to reflect once more on the mission of global aHUS patient advocacy and consider its future if needed.
Thinking about the activities of the aHUS Alliance Global Action and how it fosters improvement, awareness and better outcomes for aHUS everywhere.
The aHUS Alliance is a worldwide network of patient organisations and advocates dedicated to addressing the challenges faced by individuals living with atypical Hemolytic Uremic Syndrome.
(aHUS) aHUS alliance Global Action was founded nearly nine years ago to create a communications platform to connect, inform and collaborate with the broader aHUS community.
Our vision embraced the need for and unity of the alliance’s vision of “Good will come together”
A world where every aHUS patient receives the needed timely diagnosis, optimal care, and access to treatments regardless of location.
To do so by connecting , educating and empowering individuals in the global aHUS community by open communication advocating for systemic improvements in diagnosis, care, and treatment access for all patients.
That means aiming to :
- Raise Awareness of living with aHUS by educating the public and healthcare professionals about aHUS and its impact.
- Advocate for Access by working with stakeholders to ensure equitable access to life-saving treatments.
- Foster Research Collaboration by supporting scientific efforts to understand aHUS and improve therapies, including its own research
- Empower Patients by providing resources to help patients and caregivers make informed decisions.
And action too including
Global Awareness Campaigns:
• aHUS Awareness Day (September 24): A coordinated effort to increase visibility for aHUS.
• Outreach through social media, webinars, and informational materials.
Patient and Caregiver Support
• Creation of educational resources, FAQs, and guides about aHUS and available treatments.
• Advocacy for patient- centred care models like the the Patient Treatment Discontinuation Decision Model
Advocacy and Policy Work
• Collaborating with policymakers to address disparities in treatment access.
• Highlighting the importance of complement inhibitor therapies like eculizumab and its biosimilars, ravulizumab, crovalimab and Iptacopan
Research Participation
• Promoting patient research to collect data on aHUS diagnosis , treatment outcomes, and patient experiences
. Partnering in authorship of aHUS research
. Creating a patients agenda for research that matters to them.
Some of the notable achievements to date
- 10 aHUS awareness days
- Participating in 2 aHUS KDIGO conferences
- Facilitating listening session with USA’s health technology decision maker, FDA
- Presentation at an ISN Symposium on aHUS
- Partnered with the Harvard Medical School in a symposium of TMA and aHUS
- Presentations at USTMA conferences
- Direct input to Ravulizumab access decision in the UK ( including the first comparison with eculizumab study)
- Creation of the aHUS rest of world network
- Conceiving and creating an advisory body for Pharma input
- Maintaining a database of over 1300 aHUS related research articles
- Undertook the first global study of aHUS patients and their families living with aHUS in 2014
- Followed up with two more global polls in 2016 and 2024
- Produced four in depth study reports on the aHUS Diagnosis Process
- Participated in 9 Rare Disease Awareness Days
- Written and published over 700 informative website articles about aHUS and related matters, including non- English articles and external authors
- Maintains the broadest most continuous horizon scan for complement inhibitor technologies
- Written a history of pioneering aHUS endeavours, including the English translation of the first aHUS article by Conrad Von Gasser naming the disease
- Identified and promoted the need for a change of name for the disease
- Visited and wrote about the work of four aHUS centres of excellence in France , Italy and UK.
- Also , although perhaps not for us to say so , but the efforts and drive of a small number of volunteers to sustain all into a 10th year now is also a notable achievement in itself.
And for the future?
To play a part in it if people will still need, want and continue support our contribution as the most active , impactful global aHUS organisation providing vital insights to drive positive change.
But nothing lasts forever.
Taking it a year at a time, aHUS alliance Global Action’s activity needed for the coming year would include :
- Listening to the aHUS community voice and lived experience and advocate based on needs, preferences and priorities as a team
- publishing the results of the comparison of aHUS in 2014 with 2024 and the insights it will give about aHUS as a rare disease
- raising awareness of and establish more use of the Treatment Discontinuation Decision Model by patients
- continuing to document the pioneering efforts of more of those who got aHUS to where it is today
- accepting invitations to join in with or speak at aHUS/TMA conferences and webinars
- proposing a comprehensive patient voice framework to input to the planned change of our disease name
- setting the scene for the two big awareness days, Rare Disease and aHUS
- publishing another 100 blog articles to inform and empower aHUS patients.
- surviving!!
Still needed? Maybe for now.
Together with innumerable others around the world we believe we can still make a difference needed in the lives of aHUS patients and their families wherever they are. If they still want us to.
Contact Us:
• Website: www.ahusallianceaction.org
• Email: info@ahusalliance.org.
• Social Media: X @ahusallinceact
Thank You
Article No: 706
