aHUS Day 2019

 

The first campaign to raise awareness for the rare disease atypical HUS was launched in 2015 by the aHUS Alliance, an umbrella group joining together aHUS advocates and patient organizations around the world.  Why choose 24 September to mark aHUS Awareness Day? During that week 65 years ago the term Haemolytic Uraemic Syndrome first appeared in medical literature. HUS was given its name by Conrad von Gasser, when he and his research team described in an article for a Swiss clinical publication the illness they had been studying which caused blood clotting, anemia and kidney failure. (Click FMI on 65 yrs since von Gasser)

 

Held each 24 September, the aHUS Alliance’s international ‘aHUS Day’ provides an opportunity for people and groups interested in aHUS community to join together and aid visibility to highlight information, insights, and issues specific to atypical HUS.  Atypical Hemolytic Uremic Syndrome is a life-threatening disease characterized by the systemic formation of tiny blood clots (thrombotic microangiopathy, orTMAs) throughout the body potentially causing damage to the kidneys and other organs, with complications that may include serious or fatal events including stroke, cardiac issues, and kidney failure.  Atypical HUS affects both adults and children and is often associated with an uncontrolled activation of the complement system, part of the body’s protective immune system. One of more than 7000 rare diseases, atypical HUS affects an estimated 2 people per million. (Click FMI on 2019 aHUS Facts, or learn how aHUS impacts daily life, Know aHUS)

 

Let’s look at a sampling of what people and groups did to mark 2019 aHUS Awareness Day.

 

 

The 2019 aHUS Day Campaign Begins

 

The first week in June 2019, the aHUS Alliance posted its article outlining goals and resources for this year’s 24 September campaign, noting the need to raise awareness and to invite participation from around the world.

 

The 2019 theme set the tone for this year’s aHUS Day campaign:  Family & Community Support. For people living with a rare disease like atypical HUS, our sense of “family” is isn’t rooted in a domestic arrangement of people related by bloodline or legal ties, nor is “community” narrowly defined a group of people in a particular location. Instead, the aHUS community is a global union of interested parties who shares common concerns and is united through shared experiences, support, and purpose.

 

Individuals, families, medical teams, service groups, researchers, and businesses around the world were all invited to create outreach efforts and events, and to participate in raising awareness for atypical HUS.

 

 

 

aHUS Awareness Day, 2019 Social Media:  Ramping Up the Focus for 24 Sept!

 

The aHUS Alliance account on Twitter has over 450 followers, who in September viewed over 75 Tweets related to aHUS day, to include images as well as insights about atypical HUS issues and links to aHUS research or informational resources. Our @aHUSallianceAct Twitter account for yielded 34.7K Tweet Impressions, or a total that counts all the times our Tweets were seen.

 

Each aHUS Awareness Day campaign is highlighted on a separate Twitter account @aHUS24Sept, which emphasized the multi-national spirit of aHUS day.  With Tweets highlighting other aHUS Twitter feeds, our 24 Sept campaign account has over 260 followers and featured over 50 distinct Tweets, earning 22.5K Tweet Impressions.

 

 

COUNT as a Supporter of aHUS Awareness Day 2019

About 500 people visited the website of the aHUS Alliance in response to social media appeals to “Click to Count!” with most continuing to review our site’s original content of aHUS-specific articles and resources.

 

 

International Connections for aHUS Day 2019

Although aHUS Alliance tweets were also Spanish, French, Polish, and Russian languages for 2019 aHUS Day, we’re pleased to note that videos by Kidney Research UK and created in collaboration with @aHUSUKvoice and the Renal Association (UK) received Top Mention on our Twitter analytics.

 

One such video Tweeted from @Kidney_Research (44.6K followers) on 24 Sept 2019 : “Professor Tim Goodship explains how aHUS patient Ros’ story highlights the importance of doing research with families where several family members are affected by the disease. #aHUSday #aHUS24Sept @aHUS24Sept @aHUSAllianceAct pic.twitter.com/dMMw5JghRQ”

 

 

Especially moving was the 2019 aHUS Family Photo Album, a 2019 project created by the aHUS Alliance to shine a spotlight on aHUS patients and families around the world. Entries were received by 86 patients in 23 nations, participating by sharing photos and text that showed the many ways their lives are enriched by a wide array of family and community support. Join the more than 670 people to date that have viewed this international collaboration of aHUS families. Watch it at http://bit.ly/aHUSday2019

 

aHUS Awareness Day is every day for patients and their families, so we invite you to stay connected with aHUS information and news on the aHUS Alliance Facebook page as well as on Twitter.

 

 

 

New for 2019 aHUS Awareness Day:  Call to Action!

To mark this year’s 5th anniversary of aHUS Awareness Day, the aHUS Alliance created a special focus for 24 Sept 2019 with this 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.  Given that, the aHUS Alliance requested 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.

 

 

 

 

Both individuals and groups answered the 2019 aHUS Day call to action, including the family and friends of Kingston Beatmann family in New Orleans (USA). Here’s their entry for the aHUS Alliance’s 2019 aHUS Family Photo Album. The Beatmann family supported aHUS Awareness Day by hosting a community blood donation drive, and collecting 58 units of blood to ‘pay back’ every one of the units needed by their son affected by aHUS.

 

 

 

 

A corporate blood drive was hosted by Alexion Pharmaceuticals on 24 September, with a Tweet of support for aHUS Day.  In the photo at Alexion HQ, you’ll note a donor signing up to give the ‘Gift of Life’ in support of aHUS patients as well as blood drive registrants wearing aHUS Day shirts to recognize this very special blood donation drive held to honor the challenges faced by aHUS patients and their families.

“In honor of the 5th annual #aHUSday, Alexion employees have been donating their time (and blood) to show support for the community and our friends at @aHUSAllianceAct…”

 

(Click to read More, our article on this 24 Sept 2019 blood donation event at Alexion)

 

 

 

What’s next?  Moving Forward

 

These events and articles occurred in the days leading up to the 24 Sept 2019 campaign, on aHUS Awareness Day, or relate to follow up actions for aHUS advocacy in the coming days and months.

The aHUS Alliance would like to learn more about your own experiences with the 24 Sept campaign call to support blood donation efforts and organ donor registration program.  Will you continue to raise awareness for atypical HUS with future events or progams? 

Let us know! E: info@aHUSallianceAction.org

 

aHUS in Taiwan

 

Dr YIru Chen of Taiwan contacted the aHUS Alliance to let us know of an interview that appeared in the China Times on 24 Sept 2019, aHUS Day. It’s particularly meaningful since the story combines the struggle of a woman with a very complex and severe aHUS presentation, and how her medical team joined with her family and community to provide support and clinical care. Thank you Dr Chen, for your commitment and dedication.  (We appreciate the effort to bring you this interview in English as well as in the original language.  Read it HERE.)

 

 

Atypical HUS in the UK

The National aHUS Service, in combination with the National Renal Complement Therapeutics Centre, hosted another of its ‘aHUS Roadshows’ patients and families in Birmingham on 28 Sept 2019.  Those attending the large turnout heard these presentations, and much more: Prof D Kavanagh on pregnancy and aHUS, Prof Neil Sheerin on the SETSaHUS (stopping eculizumab) clinical trial, and Dr Michael Malina on important aHUS pediatric issues  Our thanks to the UK patient group’s @aHUSUKvoice and their Twitter feed which informs and raises awareness regarding key interests to the aHUS Alliance and global aHUS community.

 

 

 

Atypical HUS at the Rare Genetic Disease Symposium (Cleveland Clinic, 12 Sept 2019)

 

‘Patient involvement’ is easy to write about in an article, but sadly it is seldom the practice that aHUS families are asked to translate their experiences into insights that can deepen discussions for academics and industry. That changed on 12 Sept 2019 a room filled to capacity with adult and pediatric nephrologists. The aHUS Alliance presentation was among three specific to atypical HUS offered at a recent “MedEd” event held at the Cleveland Clinic, and organized by Dr Rupesh Raina (AGMC, Cleveland Clinic /Research Dir: Akron Nephrology Associates/ Akron Children’s Hospital/ Case Western Reserve University). Dr. Christoph Licht of Toronto’s Hospital for Sick Children (Canada) spoke on the topic of ‘aHUS, a Genetic Disease:  Recent Advancements in Diagnosis and Treatment’, Dr Arvind Bagga of the All India Medical Institute (AIIMS, New Delhi IN) on ‘Orphan Drug Challenges in the Developing World’, and presenting the ‘aHUS Patients’ Perspective’ for the aHUS Alliance was Linda Burke (Maine, USA).

 

Read about the Symposium        Why this invitation to the aHUS Alliance (Publication, pg 188)

 

 

 

 

aHUS Advocacy in the Rest of the World (R.O.W.) 

What happens when a patient with the rare disease atypical HUS lives in a nation without an aHUS patient organization?  The aHUS Alliance steps forward to offer assistance for the aHUS families and emerging aHUS advocacy groups in the Rest of the World (R.O.W.) 

 

Read the article on establishing new aHUS advocacy groups, and contact the aHUS Alliance for more information and support.  E: info@aHUSallianceAction.org

 

 

 

 

Why We Advocate

 

The aHUS Alliance advocates as the international voice of aHUS patients and families because that’s what we are – adult atypical HUS patients and aHUS family caregivers. Our insights are driven by aHUS patient experiences, and we create original content (articles, images, resources) without the hired assistance of communications or social media professionals. We’re volunteers whose ‘pay’ comes in the form of helping our own loved ones and other aHUS families around the world who struggle with the varied and serious impacts of atypical HUS.

 

Some of us have family members who have been lost to this very rare disease.  In 2019 we added the image of Forget Me Not flowers as a symbol of remembrance and support for aHUS families.  We keenly feel each empty chair, on aHUS Day and every day, missing those who have lost their lives because of atypical HUS.

 

 

 

 

Stay Connected – Stay Informed

 

Network of Nations:  Visit our list of quick links to 30+ nations with aHUS advocacy outlets

 

 

 

 

aHUS Clinicians & Researchers:  A network of aHUS expertise

 

 

 

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