Atypical HUS:  PRESS KIT

 aHUS Info & Resources

Patients sharing their rare disease journey help bring new levels of understanding to researchers, industry, and the general public.  Whether you’re living with atypical HUS or a member of the press, here’s a list of various aHUS information and resource links likely to provide a useful starting point for aHUS interviews, advocacy projects, or social media outreach. The aHUS Alliance, a global affiliation of patient organizations and aHUS advocates around the world, is dedicated to sharing information and resources that foster a better understanding of the challenges faced by those living with the ultra rare disease atypical hemolytic uremic syndrome.

Atypical HUS, a Rare Disease (Medical Information):

Genetic Atypical Hemolytic-Uremic SyndromeGeneReviews® (updated June 2016)

Research & Publications  Organized by Topic, international aHUS research  (Links & Lists)

KDIGO Conclusions from a “Kidney Disease: Improving Global Outcomes” for aHUS and C3 Glomerulopathy (Dec 2016)

See related article:  aHUS Alliance at the KDIGO Conference

 

Atypical HUS – RESOURCES   

Atypical HUS Resources Page Providing a snapshot of key articles & assets and organized by category, you can see an overview of topic areas including general info, clinical networks, the aHUS Global Advocate (newsletter), patient engagement, advocacy around the world, teens & children, and much more.

Atypical HUS – INFO Centre   

Our Info Centre acts as landing page for cornerstone content that’s key for aHUS info and advocacy, to include pages devoted to:  Research & Publications, aHUS Awareness Day & Rare Disease Day,  SHUa: en Español, SHUa: en Français, aHUS videos, aHUS Patient Research Agenda & Polls, and our Social Media. 

Awareness Days for the aHUS Community 

24 September – aHUS Awareness Day!  Begun in 2015 as a special day to raise awareness for atypical HUS, we announce a theme each year and promote special projects to raise the visibility of the global aHUS community.  (24 Sept Campaign: Resources & Current Campaign (Twitter @aHUS24Sept)

Rare Disease Day is held on the last day every February & meant to raise awareness of over 7000 different rare diseases, including aHUS. 

Visit our aHUS Awareness Day & RD Day page for Info & Resources

 

 

aHUS FACT SHEETS (24 Sept Campaign, created for aHUS Awareness Day)

 

2022 – SEPT – 2023

Atypical HUS FACT SHEET

ARTICLE https://bit.ly/aHUSfacts2022sept2023 

Looking for the latest facts and key research about the rare disease atypical hemolytic uremic syndrome? You’ve found it. Information and medical knowledge can change rapidly, which can be problematic for those looking for the latest facts and key research about the rare disease atypical HUS (aHUS). 

Easy to understand, this describes the rare disease aHUS and how it impacts patients and their families. Available to read or print (as a double-sided page) this pdf is suitable to distribute at events or meetings, as well as to share with friends or the general public (employers, school staff, and others). This simple resource was designed to be useful for all nations, public and rare disease awareness campaigns, aHUS patient organizations, and international groups and advocates interested in atypical HUS.

Direct to the pdf  FACT SHEET: 2022 – SEPT  -2023   bit.ly/aHUS2022facts

 

2021 – SEPT – 2022 Edition (Below)

2021  FAQs – Answers to the most Frequently Asked Questions

What is atypical HUS?

How many people have atypical HUS?

What causes atypical HUS? Are there different types of aHUS?

What are the symptoms of aHUS?

How is atypical HUS treated?

Is there a cure for atypical HUS? How long is a person treated for aHUS?

There seems to be little advocacy effort or awareness about atypical HUS, what can be done?

Click below for a Print-friendly pdf to Read & Share

FAQs for aHUS Awareness Day 2021 (pdf)

 

 

 

2021 aHUS Global Poll Results on Atypical HUS Diagnosis

 

Atypical HUS Diagnosis:  2021 Survey of Patient Experiences

aHUS Global Action – Patient & Caregiver Insights & Pathways  “The patient’s journey to aHUS diagnosis is as individual as the patients themselves.”

The aHUS alliance Global Action conducted a survey to provide an opportunity for adult patients and aHUS pediatric caregivers around the world to share their own experiences and perception of the aHUS diagnosis process.
Open from 25 November 2020 through 19 January 2021, the survey goals were to capture diagnosis process timelines, aHUS symptom severity, and its impact on health. The 45-question poll provided the opportunity to gain more understanding of the atypical HUS diagnosis pathway and what patients thought or felt about their experiences.  Greater awareness of this very rare disease can foster a more rapid and accurate diagnosis of atypical HUS, which may lead to research advancements and promote better patient outcomes. Collectively that evidence of patient perceptions can be used to inform, educate and help shape better diagnosis experiences for those yet to suffer an aHUS onset.

 

INFO & RESULTS from our 2021 Survey on the aHUS Patient Diagnostic Experience 

Poll QUESTIONS:  Click HERE to View the 2021 aHUS Diagnostic Survey tool 

2021 aHUS Global Poll: Background & Purpose- CONNECTING THE DOTS

1st Report (issued 24 Sept 2021) – Article w/ Background   REPORT 1 (pdf):  Patients’ experience and perception of the aHUS diagnostic process  

2nd Report (issued 18 Dec 2021) – Article w/ Background   REPORT 2 (pdf):  Patients’ experience and perception of the aHUS diagnostic process  

3rd Report (issued 28 Feb 2022) – Article w/ Background  REPORT 3 (pdf)Patients’ experience of specialist care and the diagnosis decision

4th Report  (issued 10 June 2022)  Article w/ Background  REPORT 4 (pdf) Impact of process event and patient
demographic variables on process outcomes

 

 

2016 aHUS Global Poll

Results & Graphs (2016)

Poll Questions  (2016)

2016 Poll White Papers: Access to aHUS Treatment  also aHUS and Dialysis Insights

 

 

 

aHUS Alliance – 2 Video Channels to provide Information & Insights

Atypical HUS Clinical ChannelYouTube, features medical & research content

(Also see Playlists)

Atypical HUS Global Patient VoiceYouTube, focus on patients & their families    

 

 

 

aHUS Awareness Day – 24 September

2015 – Press Release, First world aHUS Awareness Day 

2016 – Press Release, aHUS Awareness Day campaign: Rising above aHUS (Updated Info)

aHUS Awareness Day – Images & Graphics (from the aHUS Alliance)

Videos for aHUS Awareness Day, see our YouTube Channel: Atypical HUS Global Patient Voice

Videos & Projects: aHUS Awareness Day Library (2015 – Present)    

Rare Disease Day – annual global event, the last day of February

Rare Disease Day Resources & Press Kit available in multiple languages (from EURORDIS)

Rare Disease Day – Images & Graphics (from the aHUS Alliance)

aHUS Videos for Rare Disease Day, see our YouTube Channel: Atypical HUS Global Patient Voice

 

 

Additional Resources

Directory of Patient Associations & aHUS Advocacy

Overview of Key Articles & Original Content

Orphanet – aHUS Alliance & aHUS Global Registry, collaboration. Article: Global aHUS Registry

Atypical HUS India, UN video presentation. Article: UN Rare Disease NGO

aHUS Therapeutic Drug R & D (2020)

aHUS Alliance – (archived) Documents from our 1st Info Centre

RareConnect – aHUS Global Community  

 

Connect with the aHUS Alliance

Website:  www.aHUSallianceAction.org E: info@aHUSallianceAction.org
Facebook Twitter: @aHUSallianceAct