The Many Faces of Atypical HUS: Rare Disease Day 2018

 

 

What happens after the world annually marks Rare Disease Day on the last day of February? We carry on with the intent and goals of Rare Disease Day all year round. The need to raise awareness about rare diseases like atypical HUS continues throughout the year. Awareness for the challenges that face aHUS patients of all ages. Awareness of the impact that aHUS has on multiple organs, and across all areas of life for patients and their whole family. Awareness of the emotional stresses and economic burdens for aHUS families. Awareness of the need for broader access to drugs, current therapies, and expanded treatment options. Awareness of the need for more collaborative initiatives, more research, improved diagnosis, and shared information about this life-threatening disease.

 

The  aHUS Alliance project for Rare Disease Day 2018 focused on gathering patient experiences about genetic variants and triggers for aHUS activity, and there were 103 participants from 19 nations. (Watch the Video. Read about this project.) You’ll see the many faces of aHUS, but all offer a unique look into patient experiences and sadly some patient stories are portrayed in memorial tributes to lives lost to this rare and devastating disease. We thank participants for sharing these beautiful lives, rising about aHUS.

Kamal D Shah, founder of Atypical HUS India. Read more about Kamal’s inspiring aHUS story, including Kamal’s speech to the United Nations NGO committee in this aHUS interview.

 

How did the voices of aHUS community join together to provide insight as well as inspiration, with their participation in this aHUS Alliance project as part of the 2018 Rare Disease Day theme of ‘Research’? Five questions were answered, providing an opportunity to drill down data sets. Questions abound, but will project results yield confirmation of previous efforts or perhaps indicate new avenues to explore? Expect to see articles and data from this aHUS Alliance project, as well as regarding clinical trial and pharma pipeline updates, in the near future. National patient organizations around the world with interests in aHUS will continue initiatives and efforts, both individually and in partnership with others.An interim  aHUS Patients Research Agenda, developed by and for international advocates who are themselves patients or caregivers, will continue to guide efforts. Clinicians and investigators will continue to learn, explore and treat but also to join in collaborative efforts that will add communication, sharing, and information to build a brighter future. A re-set of past practice for patient engagement is needed to build more effective pathways for communications and stakeholder interface.

 

As advocacy grows throughout 2018, we encourage people and groups to treat every day as a fresh opportunity to learn, share, and collaborate. The aHUS Alliance invites academics, researchers, industry, and professional societies or groups to join with us in initiatives of mutual interest. (Contact us:  info@aHUSallianceAction.org)The aHUS Alliance 2018 Rare Disease Day project showcased the many faces of aHUS, but we’d be remiss if we didn’t also thank aHUS advocates who posted images of awareness and support for Rare Disease Day on social media. (See below, posted here by permission).

 

 

 

Jill C-S (Alaska USA) joined in the global Rare Disease Day 2018 campaign to #ShareYourRare, sharing this photo from a strong & loving Mom, in honor of her beautiful daughter Britney who today is doing fine despite her aHUS diagnosis.

 

 

 

Nette C-D created a very moving photo collage that’s a tribute to her amazing daughter Phoenixx D (Massachusetts USA).  Diagnosed at 10 months of age, Phoenixx has bravely battled through troubled times and will shortly celebrate her 4th birthday.

 

 

Isabella P (Florida, USA) shows ‘personality plus’ as she poses with a beautifully decorated cake to mark Rare Disease Day last year.  Look at how this precious child has grown, in size and confidence, wearing an aHUS awareness t-shirt for Rare Disease Day 2018.

 

 

 

aHUS & Rare Disease Day advocacy may be varied, but it is always meaningful and valued.  Payton H (Texas USA) was excited about sharing Rare Disease Day with her school and classmates, and gave awareness bracelets to all the teachers.  In this photo, Payton proudly displays this colorful poster with its heartfelt message ‘We support Payton’.  The aHUS Alliance does too!

 

 

 

Jaxxon R (Texas USA) can capture the world by the tail.  His loving mother helps this wonderful child live a full life, refusing to be defined by his diagnosis.

 

 

 

 

Posted on Rare Disease Day 2018 this image exemplifies the title of this blog, The Many Faces of Atypical HUS.  Look beyond the Star Wars costumes, and you’ll find aHUS family strength and resilience embodied in this Rare Disease Day photo posted by Jeff S (Pennsylvania USA) in honor of his lovely daughter Erica.  Starting in 2013, Jeff continues to post this photo each year and on Rare Disease Day 2018 it reminds us not only of the importance of supportive family and friends – but to also seize the joy in each day and not to let our rare disease define us.

 

 

 

 

The need for rare disease advocacy does not end on the last day of February, it begins anew with re-energized commitment, new collaborations, and innovative ideas to advance & make progress.  For those living with atypical HUS, every day is Rare Disease Day – let’s work together for a brighter tomorrow.

 

 

Discover aHUS Fact Sheets, YouTube channels for aHUS clinical presentations or patient voices, whitepapers, outreach materials,

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