aHUS Alliance Global Action, update – On 28 February 2021 our slideshow launched, featuring 107 very special people from 21 nations. A most important part of any Rare Disease Day effort is to connect information and provide meaningful insights into the lives of families affected by a rare disease like atypical HUS. Providing beautiful faces and authentic patient voices, this 2021 project builds on the theme of our 2021 aHUS Global Patient Survey on patient experiences with diagnosis and treatment. Our deepest thanks go out to slideshow participants from all 7 continents, and to this project’s leader Jeff Schmidt.
Article No 407
5 January 2021
The 14th world Rare Disease Day will be held on 28 February 2021 (Sunday), an annual event that occurs the last day of each February to highlight issues important to over 350 million people globally affected by more than 6,000 rare diseases. One of those rare diseases is atypical hemolytic uremic syndrome (atypical HUS or aHUS), which affects an estimated 2 people per million.
Rare disease populations are counted differently around the world, so statistics about rare disease vary by definition. Atypical haemolytic uraemic syndrome not only has different spellings and terminology, but updated differences in its classification means that numbers of aHUS patients worldwide are likely to be a topic for further exploration and research. Given the small numbers of people diagnosed with atypical HUS, we’re appealing to global aHUS patient voices to join together and help raise awareness for the challenges and needs of aHUS families around the world.
On February 28, 2021 the world will join together to raise awareness for rare diseases like aHUS. Our international video project for Rare Disease Day 2021 supports the aHUS diagnosis survey currently underway by the aHUS Alliance, open until 17 Jan with details at https://bit.ly/aHUS2021survey. We’re pleased to announce this aHUS global action project will be lead once again by the capable and talented Jeff Schmidt.
2021 Project – Details
We welcome ALL those affected by atypical HUS within our global community to join in this project. (More information about world Rare Disease Day and atypical HUS resources are below.) If you’ve been diagnosed with aHUS or are an aHUS family caregiver who wants to participate in this year’s Rare Disease Day video, please send the following to Jeff Schmidt E: Jeff@aHUSallianceAction.org
1 – One photo (of yourself/the person with diagnosed with aHUS)
2 – Name & Location (where are you from, including nation)
3 – Length of time between 1st aHUS activity/illness until diagnosed with aHUS
4 – Type of aHUS treatment received after this diagnosis
(ex. Eculizumab, Ravulizumab, plasma therapies, Rituximab, None…)
5 – How long did it take from the 1st aHUS treatment until you “feel better”?
6 – What does “feel better” mean to you?
(ex. leave the hospital, stop dialysis, better BP, go back to school/work, play sports, etc)
A customized slide using that information will be created as a slide for you you and will be posted to raise awareness for atypical HUS and Rare Disease Day 2021. Your slide will be included our aHUS Alliance global action presentation, a video/slideshow that will debut for 28 February 2021, world Rare Disease Day.
In order to raise awareness leading up to Rare Disease Day we hope people living with aHUS will start sending in submissions right away (don’t wait until the end) to start our RD day campaign immediately. Submissions are due by the end of 2/17/2021
Please email information for your entry to Jeff Schmidt at firstname.lastname@example.org
(See sample slide below)
What is 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 the ability to provide insight into drug access, diagnosis, policy, and other key aspects within their country.
Their official world 2021 Rare Disease Day resources: https://rarediseaseday.org/downloads
Rare Disease Day – aHUS Alliance
2021 Rare Disease Day – Atypical HUS ‘Call to Action’ aHUS Patient Survey on Diagnosis. Open through 17 Jan 2021 to ALL aHUS patients worldwide. FMI: https://bit.ly/aHUS2021survey
General Info & Resources: aHUS Day & RD Day
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.
RD Day- aHUS Video Playlist – Created by Patients, Families, and Supporters
RD Day- aHUS Video Playlist – Created by aHUS Patient Groups
5 Jan 2021