September 24, 2019 will mark the 5th annual aHUS Awareness Day, created by the aHUS Alliance to raise awareness for the rare disease atypical HUS. People affected by aHUS face many challenges and greatly benefit from support of friends, family, and their community which led to the
24 Sept campaign theme for 2019 aHUS Awareness Day ‘Family & Community Support’
For people living with aHUS, “family” isn’t just a domestic arrangement of people related by bloodline or legal ties, nor is “community” narrowly defined as a group of people in a particular location. The aHUS community shares common concerns and is linked through joint needs and actions into a social family that shares experiences and support. We are united in courage and purpose.
Each year the aHUS Alliance invites our global aHUS community to join in the “celebration” of aHUS Awareness Day by participating in a video project. In years past we have asked you to send a message to the world via an “airmail letter”, colour an aHUS colouring page (or create your own artwork), submit a message to “educate” the medical professionals and aHUS researchers, and send a message of thanks to your favorite caregiver(s) or advocate(s). For our 2019 project, we invite people affected by atypical HUS to be a part of our ‘aHUS Family Photo Album’ to show the world our global aHUS family to help raise awareness of this disease that has brought us together. “Family” can mean so many different things to different people: our immediate family, other aHUS families, friends, co-workers, school mates, members of a team or club, nurses or doctors, pets – anything or anyone from whom you gather love or support.
Patients and families around the world who are affected by this rare disease are invited to participate in this aHUS Alliance ‘aHUS Family Photo Album‘ project, to launch on 24 September 2019 – international aHUS Awareness Day and follow the 2019 aHUS Day theme of family or community support. We’re pleased to announce that Jeff Schmidt (USA) again will lead this international project.
Click HERE to view the 2019 aHUS Awareness Day project details.
Click HERE to view other ways that you can participate and raise awareness for aHUS.
Click HERE to see the final 2019 aHUS Awareness day video
If you are willing to share your story aHUS Canada would love to post it on our website. Click here to read some stories from Canadian aHUS patients. Reading about other’s journeys with aHUS can be encouraging, knowing that we are not alone and together we can support each other. If you would like to share your story on aHUS Canada website, please email your story to our secretary at margriet@ahuscanada.org
Join to help raise awareness of this very rare disease – remember to tag aHUS Canada and the aHUS Alliance on social media or email us at info@ahuscanada.org
Hashtags: #aHUS24Sept #aHUSday #SHUa24Sept #aHUSaware