Thursday, February 28, 2013

1 person in 20 is affected by a rare disease

1 person in 20 is affected by a rare disease
Today is a World Rare Disease Day 2013!
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.

Wednesday, February 27, 2013

Awareness for Respiratory diseases: European level

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.

Sunday, February 24, 2013

Personalized, Predictive, Preventive, and Participatory medicine for Respiratory diseases

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.

Friday, February 22, 2013

Alpha-1-Antitrypsin Deficiency: its time for a cure!!!

Respiratory Decade is inviting you to important Respiratory events:

To celebrate the 50th Anniversary since the Discovery of Alpha-1-Antitrypsin (AAT) LOVEXAIR organized two key events: The International Scientific Conference related to AAT Deficiency and the 4th International Patient Congress, which will be celebrated from 11-13 April, in the Hotel Hilton Diagonal Mar, Barcelona, 2013. This year being the Year for Rare Disease in Spain. 

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.

Wednesday, February 20, 2013

World Rare Disease Day 2013

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".

Tuesday, February 19, 2013

Rare Disorders without Border: 28 February 2013

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:

Sunday, February 10, 2013

Lets create awareness for Respiratory conditions

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!

Sunday, February 3, 2013

Endobronchial Ultrasound LIVE COURSE 2013

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

University College London Hospital is a referral centre for EBUS in UK. Over 3,000 procedures have been performed during the last 5 years.We do 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 where you can print and fill in the application form.

Sunday Respiratory Video

Sunday Respiratory Video by Depeche Mode: