Life-threatening or chronically debilitating diseases – mostly
inherited – that affect so few people that combined efforts are needed
to:
reduce the number of people contracting the diseases
prevent newborns and young children dying from them
preserve sufferers' quality of life and socio-economic potential.
In EU countries, any disease
affecting fewer than 5 people in 10 000 is considered rare. That number
may seem small, but it translates into approximately 246 000 people
throughout the EU's 27 member countries. Most patients suffer from even
rarer diseases affecting 1 person in 100 000 or more.
It is estimated that today in the EU,
5-8000 distinct rare diseases affect 6-8% of the population – between
27 and 36 million people.
European Respiratory Society produced documentary for increase awareness for Respiratory diseases.
Bridging the Health Divide in Europe: Reducing inequalities and the impact of austerity measures on respiratory healthcare
This
European Respiratory Society Vision documentary was produced to help raise the awareness of
inequality of healthcare across Europe, notably in respiratory medicine.
Bringing together experts from different organizations such as the
European Respiratory Society, World Health Organisation, EuroHealthNet,
this video addresses important issues that are affecting respiratory
healthcare in today's difficult economic climate.
The European Respiratory Society hosted a critical summit this summer to discuss the growing problem of health
inequalities in Europe.
The key event, which brought together leading experts from politics
and health, created an opportunity to implement change and address the
issue of health inequalities, which are becoming even more apparent
during tough economic times.
The aim of the summit, entitled ‘Bridging the Health Divide in Europe
– exchanging experiences to reduce avoidable health inequalities and
preventable respiratory diseases’, was to follow on from goals set out
in the Tallinn charter. The event allowed healthcare stakeholders to exchange experiences on the best ways to deal with health inequalities.
Last
decade we are witnessing change from traditional reactive approach to new
complex P4 assessment of diseases. The P4 medicine is a proposed new form of
medical practice that combines Personalized, Predictive, Preventive, and
Participatory elements. This new paradigm with success can be applied for
management of respiratory diseases. For example: what does P4 medicine mean for
COPD? It will be “personalized” because it will be based on the genome of each
person; it will be “predictive” because this personalized information will be
able to determine the risk for COPD in each individual; it will be “preventive”
because, given the prediction of risk of COPD, prophylactic measures will be
able to be taken to decrease risk also with accent on awareness in each
individual case; and it will be “participative” because many of these
prophylactic interventions will require the participation of the COPD patient.
Barcelona will be the world capital in liver and lung disease
research and specialized healthcare for this momentous occasion to
create awareness about Alpha-1-Antitrypsin, in both research and
patient community empowerment. Sten Eriksson, one of the discoverers of AAT Deficiency, will also be attending this important event.
For
this special occasion we will welcome more than 200 delegates from
around the world, with representatives from patient and scientific
communities, particularly America and Europe, as well as leading
scientific experts in this chronic rare disease.
The 4th International Patient Congress, 12-13 April
will bring together patients and their family members and in parallel,
an International Scientific Conference on Alpha-1 Research, 11-12 April,
simultaneously attended by healthcare professionals and leading
scientists in Alpha-1 research and industry with expertise in advanced
therapies.
The
main focus of this event is to create heightened awareness about
Alpha-1-Antitrypsin deficiency; bring together representatives from
Alpha-1 organizations from around the world and to promote debate and
dialogue about the impact and the situation in each country; identify
unmet needs; learn the latest developments in research in advanced and
innovative therapies, and bring together both researchers and patients
to improve and support building a cure for Alpha-1 in the future: "It's
time for a cure".
The
goal is also to empower patients and their organization leaders, build
on sharing best- practices and skill-sets and form an international
working group to move forward in key areas which are considered
important, across the community as a result of participating in this
event.
Yann le Cam, Chief Executive Officer EURORDIS - European Rare Diseases Organisation,
has this message for Rare Disease Day 2013 highlighting the need to
work together internationally: "Rare Disorders without Borders".
Dear Respiratory Friends we are happy to support World Rare Diseases 2013!
The sixth Rare Disease Day takes place on 28 February 2013. This year's
slogan "Rare Disorders without Borders" emphasises the need for
international cooperation. Join an activity taking place near you to
demonstrate global solidarity. Let's go beyond borders for rare
disorders. Show your solidarity today!
This video clip has been directed by Carlo S. Hintermann and produced by
Citrullo International and Digital Room with financial support from
EURORDIS and the Health Programme of the European Union.
The patients featured are members of: Associazione Italiana Sindrome di Noonan, Duchenne Parent Project and Xeroderma Pigmentosum Society
We thank them and Simona Bellagambi from the Federazione Italiana per
le Malattie Rare (UNIAMO) for their invaluable contribution.
More than 20 people gave their time to this project that involved
stop motion animation and live action cinematography. We also thank
Mario Salvucci for the original music composed for this video.
We are inviting you on Italian event, organized by our friend Rosalba Mele:
We are living great
time. Time of progress in all domains of our life. Respiratory medicine is
developing very prompt and rapidly. Now we can apply advanced technologies in
diagnosis and treatment of respiratory diseases. But persists the huge problem
for all mankind which can generate future increasing of prevalence of lung
diseases: lack of awareness for respiratory diseases. At the first view this
problem is very simple! Unfortunately respiratory conditions are underestimated
by patients and underdiagnosed and as a result undertreated by doctors.
Awareness must be like religion for healthy people. Paradoxally, awareness
remains the “classical” issue for modern respiratory medicine.
Lets create together awareness
for Respiratory conditions!
Today we are happy to invite all interested persons to Endobronchial Ultrasound LIVE COURSE 2013!!
We are delighted to invite you to EBUS LIVE COURSE 2013 to be held at University College London Hospital, UK on 18-19 July 2013.
The course has been awarded with 11 CME credits by the Royal College of Physicians. The programme is comprised of lectures, hands on sessions for all the delegates on both days and live case demonstrations.
University College London Hospital is a referral centre for EBUS in UK. Over 3,000 procedures have been performed during the last 5 years.Wedo believe that this course will be a unique opportunity to understand the concept of Endobronchial Ultrasound and gain hands on experience in simulators.
For more information you can visit www.ebuslive.co.uk where you can print and fill in the application form.
