The Patient and Caregiver Advisory Panel serves as dedicated vehicle for patients, parents, and caregivers to raise concerns and voice opinions about what really matters to those directly dealing with the multiple facets of an aHUS diagnosis.
The aHUS Speakers’ Committee is comprised of patients, caregivers, and family members personally and directly affected by challenges associated with this rare disease diagnosis. Well-acquainted with the broad spectrum of needs and concerns of the atypical HUS community, these speakers offer insights and support to patients and their families. Following the outreach and awareness goals of the Foundation for Children with Atypical HUS, members of our aHUS Speakers’ Committee attend aHUS regional meetings to introduce resources and programming available for patients, families, and caregivers.
EVENTS - Gain Information and Support
At the root of effective advocacy efforts are individuals who strive to stay informed on a variety of issues and who make the effort to network with others to gain insight and understand different viewpoints. Visit our EVENTS tab to learn about aHUS regional meetings, webinars of interest to the aHUS community, global aHUS meetings or conferences in various nations, and other ways to gain information and support.
Get organized, keep on track of schedules, create and maintain a caregiver plan by using apps for your SmartPhone (Android or iPhone), iPad or other device.
When you're unable to advocate for yourself or a loved one, these apps can help you manage vital information and share caregiver info among multiple care team members. Be an "Apps Advocate", send us your choice for Best App!
Add your voice with other patients and families around the world in a global aHUS effort. The 1st annual aHUS Awareness Day was September 24, 2015. Learn more about the aHUS Alliance of nations, and how you can help raise awareness for aHUS patients and issues that affect them.
24 Sept is specific to atypical HUS, but also join us in recognizing world Rare Disease Day, marked annually on the last day of February.