aHUS Awareness Day

[aHUS Awareness Day @aHUS24Sept]

Thanks to all who joined in for aHUS Awareness Day 2025! #aHUS24Sept, whether through #MedEd, sharing #patientexperience, or other ways that helped raise visibility for this #raredisease. Keep #aHUSaware- follow us all year long @aHUSallianceAct & https://t.co/2ihvWjGASG

[ISTH @isth]

Rare blood clot disorders are underdiagnosed, underfunded and often misunderstood. This #RareDiseaseDay, the ISTH calls on clinicians and researchers worldwide to close the gap between rare thrombotic disease and the care patients deserve. #Thrombosis #Hematology #RareDiseaseDay

[Rare Diseases Clinical Research Network @rarediseasesnet]

🚨 New funding opportunity!

➡️ Research in #ThromboticMicroangiopathies and related rare disorders

🔗 Learn more and apply: https://t.co/wuLFsf7U7g

[Bryant Harbourne @bt_har]

Today is aHUS Awareness Day. A day to raise awareness worldwide about the rare disease, aHUS. AHUS Canada held a spring 2025 aHUS Conference. It was a great weekend full of speakers, patients and families. Videos available on aHUS Canada Youtube channel.
https://t.co/H6imEmirVr

[Richard Dune @DrRichDune]

@haynesdeborah shared her experience on aHUS Awareness Day.

Her story highlights:
- The importance of rare disease awareness.
- The challenge of critical illness in remote areas.
- The lifesaving role of the NHS.

Behind every statistic is a patient & family - resilience, risk & hope.

#PublicHealth #NHS #PatientVoices

[aHUS Awareness Day @aHUS24Sept]

Thank you to the many people at @AstraZeneca & @AlexionPharma who showed their support for aHUS Awareness Day 2025! #aHUS24Sept Via Yasser Bakr on LinkedIn https://t.co/lAsS2ppgJK

[aHUS Awareness Day @aHUS24Sept]

aHUS Awareness needs to continue beyond 24 Sept 2025 - Think atypical HUS #aHUS when diagnosing #TMA s! Visit our gallery of Info Center, check out aHUS-specific research, info in ES/PT/French & more! https://t.co/KFUlqiSWih
#aHUS24Sept #cmaTMA

[Sky News @SkyNews]

Sky's security and defence editor ＠HaynesDeborah was left fighting for her life after falling ill with an ultra-rare condition.

Today, on aHUS Awareness Day, she shares her terrifying story ⬇️

Read more 🔗 https://t.co/7O9krwC5O8

📺 Sky 501, Virgin 602 and Freeview 233

[aHUS Awareness Day @aHUS24Sept]

Patients can experience #RareDisease symptoms as acute (lasting a short time) but most often they are lifelong & #chronic (a prolonged course of illness). Atypical HUS is a very #RareDisease. #chronicillness #aHUS #PatientExperience #aHUS24Sept

[aHUS Awareness Day @aHUS24Sept]

This SETS #aHUS study publication in the @TheLancet is so important to aHUS patients (& those who treat them!) that it's a highlight in our yearly Atypical HUS Facts pdf https://t.co/wv5M4c1flQ see "Treatment Updates". Well done @NeilSheerin & team! #aHUS24Sept

[National aHUS Service @NationalaHUS]

Most patients CAN stop eculizumab/ravulizumab treatment safely! The Stopping Eculizumab Treatment Safely trial results have been published in the Lancet https://t.co/r2FTLrvcNh . Neil Sheerin led the study. The @NationalaHUS will discuss individually with patients.

[National aHUS nurses @aHUSnurses]

Today is aHUS awareness day!
This video explains more about this #raredisease which is caused by a fault in part of the immune system called #complement
https://t.co/LfQZ4oeQlZ…
Our recently published trial shows how treatment options are changing.

[Piers Morgan @piersmorgan]

Wow.. I wondered where you’d gone @haynesdeborah - very glad to see you alive and well! And congrats to the brilliant docs who saved you. 👏👏

[aHUS Awareness Day @aHUS24Sept]

Every case of atypical HUS is unique. Even among patients with the same #genetic mutation, the #raredisease #aHUS presents with wide variations in duration, severity, and organs affected.
#aHUS24Sept #TMA #complement #atypicalHUS #SHUa

[aHUS Awareness Day @aHUS24Sept]

aHUS patients & their families don't quit - they get out there every day & amaze us with their strength and resilience. #raredisease atypical HUS #aHUS Rising above aHUS, everyday! #aHUS24Sept #inspiration #hope #patientexperience

[aHUS Awareness Day @aHUS24Sept]

Via @know_rare on Facebook - thanks for your support for aHUS Awareness Day 2025! #ahus24Sept https://t.co/67vpdLhP63 #aHUS

[aHUS America @aHUSAmerica]

Difficult to follow another's #aHUS journey, but rewarding to know that lives continue to be saved by dedicated, knowledgeable clinician researchers. #aHUS24Sept
Via Scott Cowan on LinkedIn @legalPSG https://t.co/mKU2hUtemp

[Complement Kidney TMA UK @cTMAGlobal]

https://t.co/qVJDrz0VXh for more on the update story

[Complement Kidney TMA UK @cTMAGlobal]

An #aHUS patient featured in an @aHUSAllianceAct awareness video 8 years ago. After 8 years in remission Deborah relapsed a few weeks ago. For @aHUS24Sept she and her doctor talked about aHUS on UK TV https://t.co/xXJbqx0JHI

[aHUS Awareness Day @aHUS24Sept]

Clinical Trials EU: the atypical HUS community has a pathway to keep informed about #aHUS #clinicaltrials in Europe. https://t.co/M99rUA1Vn4 Learn more about the aHUS Alliance Global Action team & a partnership with @CTIN_EU. #aHUS24Sept #raredisease #complement #TMA #pharma

[aHUS Awareness Day @aHUS24Sept]

DYK that the first September 24 campaign for #aHUS Awareness Day was in 2015? The date selected was because 60 years prior the term Haemolytic Uraemic Syndrome 1st appeared in medical literature (Conrad von Gasser)
FMI: https://t.co/9VsvGjOHZd #aHUS24Sept Today is #aHUSday!