BARNHART, Mo., Aug. 12, 2015 /PRNewswire-USNewswire/ -- The aHUS
Alliance, a confederation of 14 nations with atypical HUS patient
organizations, has announced plans for a global awareness campaign
on 24 September 2015, dedicated to
sharing information and insights into the extremely rare disease
Atypical Hemolytic Uremic Syndrome and the issues facing aHUS
patients.
Atypical Hemolytic Uremic Syndrome is a life-threatening disease
characterized by the systemic formation of blood clots (TMAs)
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.
It 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.
The theme for aHUS Awareness Day is
'Communication'. 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
aHUS researchers worldwide, and increased physician education about
atypical HUS. Noted Linda Burke, an American representative
with the aHUS Alliance, "Issues facing rare disease patients affect
not only the individual with the disease, but also include the
social, financial and societal impact among family members, the
workplace, the healthcare system, and many other areas."
At the core of patient treatment, caregiver concerns, medical
team coordination, and disease research is communication of
information and issues. Len
Woodward, a UK representative of the aHUS Alliance remarked,
"Our goal for international aHUS Awareness Day was to provide
families affected by aHUS and patient organizations to have an
opportunity to join together and to shine a spotlight on aHUS
around the world. We encourage medical and research teams,
pharma, healthcare professionals, geneticists and policy makers to
communicate their own message about aHUS issues and their team's
commitment to improved patient outcomes."
September 24, 2015 was selected as
the inaugural date for the first aHUS Awareness Day because during
this same week 60 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. On 24
September the aHUS Alliance invites all stakeholders in aHUS
community to join together and aid visibility to highlight
information, insights, and issues specific to aHUS.
The aHUS Alliance encourages every nation, all individuals
affected by aHUS, and corporate or medical teams to create an
aHUS Awareness Day event, plan, or project for
September 24 that centers on the
importance of communications. Whether the choice is to focus
on global aHUS issues, key national concerns, insights into patient
life, supportive messages, or innovative programs, stakeholders in
the aHUS arena will join together to provide an authentic view of
issues and healthcare concerns facing aHUS patients today.
aHUS Alliance - About Us:
The aHUS Alliance is an umbrella organization of Atypical
Hemolytic Uremic Syndrome Patient Organizations from around the
world.
Our coordinated efforts center on the common goals of supporting
aHUS patients and their families, discussing and addressing common
concerns, and improving access to drugs and therapies that can save
lives and improve outcomes.
LEARN MORE about the aHUS Alliance at
http://www.ahusalliance.org/
Contact the aHUS Alliance: info@aHUSAlliance.org
Follow the aHUS Alliance and aHUS Awareness Day on Twitter:
@aHUSAlliance
#aHUSday
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SOURCE The aHUS Alliance