The aHUS alliance has sent out a press release to let it be known that aHUS Awareness Day is on 24 September 2016. Readers are welcomed to share it with their local media too. Use the link here
PRESS RELEASE
“LONDON, August 24, 2016 /PRNewswire/ —
The aHUS Alliance, an international group of aHUS patient organisations, has announced that its Second Global aHUS Awareness Day will be held on 24 September 2016
The theme for this year is, ‘Rising above aHUS’, symbolized by a red balloon.
(Photo: http://photos.prnewswire.com/prnh/20160822/399917 )
aHUS, or atypical Haemolytic Uraemic Syndrome, is a life-threatening disease. It is associated with an uncontrolled activation of the Complement System, an innate part of the body’s immune system, which begins to harm the body instead of protecting it.
It is an extremely rare disease, happening to no more than 1 in 2 million of the population each year.
Encounters with aHUS take many forms.
-Parents who see four of their children die without effective treatment.
-Other parents with one child surviving with an effective treatment, but losing another who did not receive it.
-Students struck by the illness on graduation and their potential restricted as their adult life’s spent on dialysis.
-Mothers successfully giving birth, but then becoming seriously ill with aHUS because of giving birth, then not being able to care for their newborn.
– Adults on dialysis because of kidney failure caused by aHUS, watching others have transplants which are denied to them because without treatment to inhibit Complement their aHUS would return to destroy their kidney graft.
– Older people reaching retirement then finding their plans dashed as the disease finally hits them.
There are many different stories about aHUS and having one day a year for the few patients around the world to express themselves is what aHUS Awareness Day is about.
The aHUS Alliance invites all stakeholders to join together to promote visibility and to highlight insights and issues specific to aHUS. Information and resources for aHUS Awareness Day will be available online at https://www.ahusallianceaction.org
There are many common concerns that affect aHUS patients regardless of nation, culture, or language such as: the need for quick and accurate diagnosis, access to treatment and healthcare options, shared data and information among global aHUS researchers, increased physician education, and advancement in ultra-orphan drug therapies.
Along with patients and carers sharing personal stories about meeting the challenges of aHUS, the aHUS Alliance encourages medical and research teams, pharma, healthcare professionals, geneticists and policy makers to share how they or their organisation’s innovations are ‘Rising above aHUS‘ to improve patient outcomes.
Notes:
aHUS is characterized by the systemic formation of blood clots throughout the body leading to red blood cell destruction, potentially causing damage to the kidneys and other organs, with complications that may include strokes, cardiac, lung or kidney failure and often death.
Information about the aHUS Alliance at https://ahusallianceaction.org/
On Twitter, Follow the aHUS Alliance @aHUSallianceAct and aHUS Awareness Day
SOURCE aHUS Alliance”
