CSL Behring supports Rare Disease Day 2012
Company aims to raise awareness of rare diseases
UK — 29.02.2012
CSL Behring UK Ltd today announced it will be supporting Rare Disease Day 2012 on 29th February. Rare Disease Day is an annual event to raise awareness of rare diseases across the globe with the ultimate aim of ensuring that rare diseases are a priority for government and health departments.
CSL Behring UK Ltd plans to undertake a whole host of activities in support of Rare Disease Day including:
- Writing to its local MP to inform him of Rare Disease Day
- Raising awareness in the local media
- Providing charity wrist bands to all employees
- Donating several thousand charity wristbands to Rare Disease UK
- Providing its regional business managers with postcards to promote Rare Disease Day
- Providing employees with the Rare Disease Day logo for their email signatures, a slide to add to their presentations and a badge to add to their Facebook profiles
- Displaying posters in its UK headquarters
Eddie Owens, General Manager, CSL Behring UK Ltd said: “CSL Behring is committed to improving the quality of life for people with rare and serious diseases and we are proud to show our support of Rare Disease Day 2012. During these tough economic times it is even more important to ensure that rare diseases do not fall down the NHS priority list and continue to get the funding and support they deserve.”
Rare Disease Day is coordinated by The European Organisation for Rare Diseases (Eurordis) at an international level and by national alliances for rare diseases in individual countries. Since 2009, Rare Disease UK has coordinated awareness raising parliamentary events throughout the UK.
The first Rare Disease Day was held in 2008 and since then it has continued to grow with last year’s event having input from patient organisations in over 40 countries. Events held in recognition of the day range from coffee mornings and sponsored walks, to large scale meetings between those involved in the field of rare diseases and talks to further educate the public and professionals.
1 in 17 people will be affected by a rare disease at some point in their life which amounts to approximately 3.5 million people in the UK. 75% of rare diseases affect children and 30% of rare disease patients will die before their 5th birthday. There are over 6,000 recognised rare diseases.
About CSL Behring
CSL Behring is a global leader in the plasma protein therapeutics industry. Passionate about improving the quality of life for people with rare and serious diseases, the company manufactures and markets a range of plasma-derived and recombinant products and related services. CSL Behring therapies are used in the treatment of rare diseases such as immune deficiency disorders, hereditary angioedema, haemophilia, von Willebrand disease and other bleeding disorders. Other products are used for the prevention of haemolytic diseases in the newborn. The company also operates one of the world’s largest plasma collection networks, CSL Plasma. CSL Behring is a subsidiary of CSL Limited, a biopharmaceutical company with headquarters in Melbourne, Australia. For more information, visit
www.cslbehring.co.uk.
About Rare Disease UK (RDUK)
RDUK is the national alliance for people with rare diseases and all who support them. We believe that everyone living with a rare disease should be able to receive high quality services, treatment and support.
RDUK is campaigning for the Health Departments across the UK to develop a strategy for rare diseases to ensure that patients and families living with these conditions have equitable access to effective services.
A UK rare disease strategy would coordinate:
- Research
Prevention, diagnosis and screening
Treatment
Care and support
- Information for patients and professionals
- Commissioning and planning of rare disease services
A cohesive, well-implemented strategy for rare diseases would improve the health and quality of life of those living with a rare condition, as well as ensuring the most effective use of NHS resources.
For further information visit
www.raredisease.org.uk
About The European Organisation for Rare Diseases (Eurordis)
EURORDIS is a non-governmental patient-driven alliance of patient organisations and individuals representing more than 492 rare diseases patient organisations in over 46 countries.
EURORDIS' mission is to build a strong pan-European community of patient organisations and people living with rare diseases, to be their voice at the European level, and - directly or indirectly - to fight against the impact of rare diseases on their lives.
To this end, EURORDIS undertakes activities on behalf of its members, notably in favour of:
- Empowering rare disease patient groups
- Advocating rare diseases as a public health issue
- Raising public rare disease awareness, and also that of national and international institutions
- Improving access to information, treatment, care, and support for people living with rare diseases
- Encouraging good practices in relation to these
- Promoting scientific and clinical rare disease research
- Developing rare disease treatments and orphan drugs
- Improving quality of life through patient support, social, welfare and educational services
For further information visit
www.eurordis.org
For further information:
Becky Turner, Communications & E-business Executive
CSL Behring UK Ltd
01444 447 429
Send an email
UK/CORP/11-0061be Date of preparation: Feb 2012