The first international aHUS Awareness Day was established by the aHUS Alliance on 24 September 2015 as a global campaign dedicated to sharing information and insights about the very rare disease Atypical Hemolytic Uremic Syndrome, and to raise awareness about the issues facing aHUS patients and their families. Each year the aHUS Alliance has encouraged medical and research teams, pharma, healthcare professionals, geneticists and policy makers to join in this awareness campaign and to spotlight their team’s commitment to improved outcomes for people living with atypical HUS.
aHUS Awareness Day 2019, are you a Supporter?
Join in by clicking on the button on our
Home Page to show your support – Make it COUNT!
To mark the 5th year anniversary of its annual aHUS Awareness Day held each 24 September, the aHUS Alliance created a ‘call to action’ asking supporters to participate in local blood donation or organ donor registration drives. Kidney function can be damaged with aHUS activity, to the extent that patients require dialysis until a kidney transplant is possible. Patients with atypical HUS can experience a high need for blood products, to include plasma (for infusion or plasma exchange treatment), red blood cells (since aHUS activity destroys RBCs and infant/toddler size can require pheresis and dialysis lines primed by blood products), and blood platelets (consumed by tiny clots in small blood vessels during disease activity).
The aHUS Awareness Day 2019 theme is ‘Family and Community Support’ and a great way show meaningful support for aHUS community is for people and organizations to answer the aHUS Alliance ‘Call to Action’ by registering as an organ donor or by donating blood.
We’re so very pleased to announce that Alexion Pharmaceuticals has chosen to launch a corporate blood donation drive to mark aHUS Awareness Day 2019.
We ask for your support as well – by taking a moment to
click the button on our Home Page and COUNT as an official
supporter of aHUS Awareness Day 2019.
We hope to share more about the events that occurred to mark 24 September, and how people and groups have supported for aHUS Awareness Day. Whether you’ve shared information about aHUS, participated in the 2019 Call to Action for organ or blood donation efforts, given an interview to the media, or otherwise joined in the spirit of aHUS day – Let Us Know
Contact Us via Email: info@aHUSallianceAction.org
Thank You for participation in 2019 aHUS Awareness Day outreach & activities,
with heartfelt appreciation from aHUS patients & their families all around the world.
