Rare Disease Day 2015: Sobi shares study findings on HT-1 adherence in adolescent patients, to highlight life-long health outcomes for rare disease patients
(Thomson Reuters ONE) -
In recognition of Rare Disease Day 2015, themed "Living with a Rare Disease,
day-by-day, hand-in-hand", Sobi will host an international webinar with the
objective of raising understanding of one of the challenges that can be
encountered by families living with a rare disease. The seminar will share the
findings from the company's investigations around improving adherence to
treatment - particularly in adolescents - for the very rare disease Hereditary
Tyrosinaemia type-1 (HT-1), which - if not treated - can be fatal.
Rare Disease Day takes place on the last day of February each year. The main
objective of Rare Disease Day is to raise awareness about rare diseases and
their impact on patients' lives and on the lives of families affected by a rare
disease or condition. Great strides have been made in early diagnosis and
effective treatment, but securing that patients are able to continue with their
treatment at all stages of their lives is a critical part of securing the best
health outcomes, particularly when chronic, potentially degenerative conditions
are concerned.
"People living with a rare disease and their families and caregivers have a need
for support and information to ensure that they do not feel isolated or alone,"
says Geoffrey McDonough, CEO and President of Sobi. "The adherence programme is
one of several activities developed together with the rare disease community
intended to increase knowledge about rare diseases such as HT-1, and to support
patients through a life-long journey from diagnosis to sustainable long-term
treatment."
Collaborating with the HT-1 community, Sobi has identified treatment adherence
in adolescents as one area in need of further support, to secure that people
with chronic, potentially degenerative conditions stay on treatment. The free
webinar will allow caregivers to take part in findings from investigations into
treatment adherence, looking at the beliefs, attitudes and behaviour of
adolescent patients living with HT-1, their families and their healthcare teams.
The webinar will be recorded and made available to caregivers engaged in HT-1
globally.
Sobi is building on the findings and is actively involved in the collaborative
development of tools that aim to address the adherence challenges identified in
the research. The first part of the outcomes of the adherence programme has been
developed in the United Kingdom and will be introduced to the broader HT-1
healthcare community during the course of 2015.
Sobi is also supporting activities in connection with Rare Disease Day in
several countries:
Austria: Sobi is supporting the nationwide Rare Disease Day campaign launched on
27 February 2015 in the Austrian Parliament, led by the Minister of Health. The
aim of the event is to raise awareness of rare diseases in the Parliament.
Germany: Sobi organised a charity run and walk on 25 February 2015 during the
59(th) Annual Meeting of the Society of Thrombosis and Hemostasis Research, the
largest German-speaking haemostasis congress. Sobi will donate up to ?25 for
each participant in the event, with the objective of raising funds to continue
to support the work of the representative organisations in the field of
haemophilia. The donation will, in equal parts, go to the German Haemophilia
Society (DHG) and Interest Group of Haemophiliacs (IGH).
North America: Sobi will engage in, and support, several events organised by the
Rare Disease Legislative Advocates taking place between 23-27 February 2015.
- - -
About HT-1
Hereditary Tyrosinaemia type 1 (HT-1), is a rare genetic disorder, which can
cause liver failure, kidney dysfunction and neurological problems. About one
newborn child in 100,000 has the disorder, although geographical variations
exist.Tyrosine is one of 20 amino acids present in all proteins. Excess tyrosine
is degraded in several steps, but in HT-1, one of the enzymes in this
degradation, fumarylacetoacetat hydrolase (FAH), is deficient. Tyrosine and its
toxic metabolites thus build up in the body and cause serious medical problems.
About Rare Disease Day
Rare Disease Day takes place on the last day of February each year. The main
objective of Rare Disease Day is to raise awareness amongst the general public
and decision-makers about rare diseases and their impact on patients' lives.
Rare Disease Day was first launched by EURORDIS and its Council of National
Alliances in 2008. The theme for Rare Disease Day 2015 is "Living with a Rare
Disease" with the slogan "day-by-day, hand-in-hand". The focus is on the daily
lives of patients, families and caregivers who are living with a rare disease
and it pays tribute to the millions of parents, siblings, grandparents, spouses,
aunts, uncles, cousins, and friends whose daily lives are impacted and who are
living day-by-day, hand-in-hand with rare disease
patients.www.rarediseaseday.org
About Sobi
Sobi is an international specialty healthcare company dedicated to rare
diseases. Our mission is to develop and deliver innovative therapies and
services to improve the lives of patients. The product portfolio is primarily
focused on Haemophilia, Inflammation and Genetic diseases. We also market a
portfolio of specialty and rare disease products for partner companies across
Europe, the Middle East, North Africa and Russia. Sobi is a pioneer in
biotechnology with world-class capabilities in protein biochemistry and
biologics manufacturing. In 2014, Sobi had total revenues of SEK 2.6 billion
(USD 380 M) and about 600 employees. The share (STO: SOBI) is listed on NASDAQ
OMX Stockholm. More information is available at www.sobi.com.
For more information please contact
Media relations
Oskar Bosson, Head of Communications
T: +46 70 410 71 80
E:oskar.bosson(at)sobi.com
Investor relations
Jörgen Winroth, Vice President, Head of Investor Relations
T: +1 347-224-0819, +1 212-579-0506, +46 8 697 2135
E: jorgen.winroth(at)sobi.com
Sobi Rare Disease Day 2015:
http://hugin.info/134557/R/1897455/673430.pdf
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Source: Swedish Orphan Biovitrum AB (publ) via GlobeNewswire
[HUG#1897455]
Unternehmensinformation / Kurzprofil:
Datum: 26.02.2015 - 09:00 Uhr
Sprache: Deutsch
News-ID 374422
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