24 Sept 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 from 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 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.
Starting Now. We encourage people from all nations to begin sharing insights and information about patient experiences as well as issues regarding aHUS diagnosis and treatment. Some resources are provided below, with more information and assets to be released by the aHUS Alliance over the next few months.
Individuals, families, medical teams, service groups, researchers, and businesses around the world are all welcome activities participate in raising awareness for atypical HUS. Feel free to join in local projects or events as they happen, there’s no need to wait until 24 September.
2019 aHUS Awareness Day – Make a Difference!
‘Family & Community Support’ – Theme for 24 Sept 2019 Campaign
Here are some ways to get involved
2019 Call to Action
Organize, Promote or Participate locally in a Blood Donation or Organ Donor Registration Drive
Plasma therapies (pheresis or infusions) are frequently used to treat atypical HUS patients in many nations, so availability of blood products is critical to saving aHUS lives. Kidney function issues affect most people diagnosed with aHUS, with many patients needing dialysis and a kidney transplant.
Patients and aHUS families around the world ask that your support includes action regarding the need for blood and organ donors. The aHUS Alliance requests that people and groups join in local efforts to participate in (or sponsor) blood donor drive and organ donor registration efforts around the world for this 2019 aHUS Awareness Day campaign. Check with your school, business or workplace about hosting an event in your area. Consider working with a charitable organization, hospital, or faith center to host a donation campaign with others, either locally or online.
Note: Blood and organ donation guidelines and policies vary widely around the world, so please check with local or national organizations to learn local details.
More Ways to Participate in aHUS Awareness Day
Send questions, photos, and articles to: info@aHUSallianceAction.org
*Write an article about how you & your family are affected by aHUS, helping others to understand your challenges and successes (up to 500 words long, to publish on the aHUS Alliance global website)
*Make a video about your experiences in gaining support from others with aHUS, either in person or online (for YouTube, the aHUS Patient Voice channel)
*Create artwork to express the 2019 theme ‘Family & Community Support’, display & share it! (drawings, tee shirt, edible art, fabric arts etc)
*Voice your experiences about offering support to another aHUS patient or family (in writing or video)
*“Sharing the Caring”: Snap photos of banners, posters, or events that locally support someone living with aHUS. Explain the group or project, its goals, and what their support means to those involved.
*Contact your local media to arrange an interview on radio, local television news, or newspaper.
*Make a list of actions & attitudes regarding what ‘gets you through’ and supports you through common aHUS challenges, social or emotional challenges, economic pressures, or other stresses of daily life. Help others with aHUS cope by sharing your ‘life hacks’ in an inspirational image, aHUS Alliance article, or YouTube video.
*Gather friends & family to set a date and go together to donate blood ‘In Memory of’ or ‘In Honor of’ a loved one with aHUS.
Join in to help raise awareness for this very rare disease – remember to
tag the aHUS Alliance on social media or email us!
Hashtags: #aHUS24Sept #aHUSday #SHUa24Sept #aHUSaware
aHUS Awareness Day – 2019 Video Project: aHUS Family Photo Album
Update: Project Complete, Launched on 24 Sept 2019
WATCH the aHUS Family Photo Album Video
“Family” can mean so many different things to different people: our immediate family, other aHUS families, friends at work or school, members of a team or club, 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.
Enjoy a review of the past two global 24 Sept campaigns:
2018 aHUS Awareness Day: Video Project Article
2017 aHUS Awareness Day: Video Project Article
Resources for aHUS Awareness Day
aHUS Fact Sheets
aHUS Press Kit
aHUS Awareness Day – Images
Contact Us: info@aHUSallianceAction.org
