The Atypical HUS Foundation

Advocacy SUMMARY

Patient & Caregiver Advisory Panel

 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. 

aHUS Speakers’ Committee

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.

APPs for Patients and Caregivers

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!

The ARTS and Rare Disease Advocacy

Currently under Construction- please check back

Future Assets (Sept. 2014) - please check back

Rare Disease Day-Projects

Tools to Support Patients & Caregivers

Become an aHUS Advocate

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