aHUS Awareness Day & Rare Disease Day

 

aHUS Awareness Day & Rare Disease Day

Information and Resources

 

 

 

aHUS AWARENESS DAY

24 September – an annual day to highlight the issues,

challenges, and remarkable individuals within the aHUS community

 

The aHUS Alliance created the 1st aHUS Awareness Day in 2015 to raise visibility about the rare disease atypical hemolytic uremic syndrome (atypical HUS). Since then, the aHUS Alliance global action team has led this annual 24 September campaign creating fact sheets, graphics, and resources to serve the needs of patients and caregivers as well as clinicians and the general public.

 

Our website offers original content created by an international volunteer team of aHUS patient advocates and family caregivers. Our articles that express global patient voices and collaborative efforts with aHUS research teams and advocacy groups.

 

 

Brief History & FAQs

 

Why 24 September?

 

What is atypical HUS? 

Video & Info: aHUS National Service U.K.

Genetic Atypical Hemolytic-Uremic Syndrome – GeneReviews®

 

When was aHUS first noted in medicine?

 

Who was Conrad von Gasser?

 

What are the different names & spellings for aHUS?

 

What is atypical HUS and how is it similar/different to the more common diagnosis of HUS?

 

How does aHUS affect people?

 

 

 

aHUS Awareness Day – Campaigns & Images

Graphics Gallery – 24 Sept

aHUS Awareness Day on Twitter @aHUS24Sept

 

 

 

 

 24 September Campaigns

Articles & Projects

Current Campaign

2020:
Article about the theme & 2020 aHUS Day Campaign

About the global Video Project

 

 

 

Past aHUS Day Campaigns

2015:
Press Release, 1st world aHUS Awareness Day
View the Project

 

2016:
Press Release, Campaign: Rising above aHUS
View the Project

 

2017:
General Info
Article about the Project
View the Project
More: 2017 Campaign

 

2018:
Article about this Campaign
View the Project
More: 2018 Campaign

 

2019:
Article about this Campaign
View the Project

 

 

aHUS Awareness Day VideosCreated by Patients, Families, and Supporters

Featuring videos about aHUS Day, a special playlist of the aHUS Alliance YouTube channel which focuses on aHUS patient experiences and viewpoints:   Atypical HUS Patient Voices

 

 

Looking for aHUS Awareness Day items?

From the group that created aHUS Day in 2015, and in response to requests from supporters,

we do offer 24 September items on Zazzle.

Click the image to see the Official aHUS Day storefront

 

 

 

RARE DISEASE DAY

 

Rare Disease Day was founded in 2008 by EURORDIS to raise awareness for the people affected by rare medical conditions and for the issues and challenges faced by patients and their families. Policy makers and healthcare systems put their focus on diseases and disorders that affect large patient populations, so rare disease advocacy groups like the aHUS Alliance often rely on families to share their experiences.  Through the expertise and volunteer efforts of clinicians and research teams, national patient groups have ability to provide insight into drug access, diagnosis, policy, and other key aspects within their country.

Atypical HUS is one of an estimated 7000+ rare diseases, individually uncommon but collectively affecting perhaps an estimated 1 in 12 people. Rare diseases are defined differently around the world, so Rare Disease Day facts vary. While exact numbers of people diagnosed with aHUS are unknown, it is estimated at 2 people per million and thus sometimes noted as an ultra-rare disease.

As an umbrella group of aHUS advocates and patient organizations in over 30 nations, the aHUS Alliance annually participates in world Rare Disease Day with articles, graphics, and projects with a specific focus on atypical HUS.

 

 

 

 

What is Rare Disease Day? (EURORDIS)

As an umbrella group of aHUS advocates and patient organizations in over 30 nations, the aHUS Alliance participates in world Rare Disease Day with articles, graphics, and projects with a specific focus on atypical HUS.

 

2017:
aHUS Alliance RD Day Project:
Article & Details     Watch It

Rare Disease Day 2017:  Topic Summary

 

2018:
aHUS Alliance RD Day Project:
Article & Details     Watch It

Rare Disease Day 2018:  Cohort 1

Rare Disease Day 2018:  Cohort 2

 

2019:
aHUS Alliance RD Day Project:
Article & Details      Watch It

 

RD Day- aHUS Video Playlist Created by Patients, Families, and Supporters

RD Day- aHUS Video Playlist – Created by aHUS Patient Groups