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Identifies 200 cases of a rare disease.

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identifies 200 cases of a disease rarely.

– thanks to the development of a census of children affected by the Spanish Association against Histiocytosis – ACHE

-the development of this census is a first step to improve the recording and analysis of the current situation of children affected by Histiocytosis in Spain

Madrid, February 2010.- within the priority objective of the Spanish Association against Histiocytosis, promote research and knowledge about the disease, have been the results of the first census of affected children of Histiocytosis in Spain, an initiative which has counted with the support of the innocent not guilty Foundation and the Spanish Federation of rare diseases – Feder-. For its implementation has counted with the collaboration of the DRA. Itziar Astigarraga, Chief of Pediatrics of the Hospital crosses Barakaldo, Member of the Scientific Committee of the international society of Histiocyte and State Coordinator of the Histiocytosis protocols within the Spanish society of Haematology and paediatric Oncology.

The Census collects data from 214 patients under the age of 18 affected by Histiocytosis since 1995 until 2009. A total of 32 hospitals in almost all the autonomous communities have been involved.

Among the conclusions that have been drawn from the analysis of the census are not differences in the incidence of the disease according to sex and the presence of a greater number of cases in the first 4 years of life (59%) than in older children. On the other hand, 214 cases surveyed, only 146 children is known its current state.

According to Raul Suarez, President of Asoc. Spanish of Histiocytosis “ the development of this census is a first step to improve the recording and analysis of the current situation of those affected by Histiocytosis in Spain and will result in a greater knowledge of the scope and monitoring of this disease. In addition will allow draw attention to the health authorities of the State and communities autonomous on the situation and problems that faced by those affected by this rare disease ”

the Census registration can also know medical practitioners in each province or autonomous community have experience or contact with the disease, which is useful as a reference for new affected.

Histiocytosis is a heterogeneous group of rare diseases that primarily affect children, but can occur at any age. It essentially consists of a dysfunction of the immune system which produces an abnormal increase of certain cells (histiocytes) that can form tumors and affect various parts of the body requiring in many cases treatment with chemotherapy and bone marrow transplant.

The knowledge about this disease is limited and many patients, adults and children, suffer delays in diagnosis and treatment. Although the mortality figure has been reduced, yet many patients have a poor prognosis and others suffer major consequences.

According to the Spanish Federation of rare diseases (ERDF) 5 years is the average estimated time lag between the onset of symptoms, unless a person with a rare disease Gets a correct diagnosis. Five years involving consequences of all kinds and severity in the evolution of the disease.

ERDF is carrying out an awareness campaign that aims to claim the start-up of centres of reference, as well as the promotion of research for rare diseases. This campaign has its central axis on the world day of the ER, which is celebrated on 28 February and develop hand in hand with the European Organisation for rare diseases (Eurordis).

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Remarks on bronchodilators NEUMOSUR.

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remarks on bronchodilator – NEUMOSUR.

Seville, February 2010.- to the reports in various media in relation to bronchodilators agonist beta-2 agonists used for the treatment of the symptoms of severe asthma and COPD (chronic obstructive pulmonary disease, and given the possibility of uncertainty and alarm transmitted to patients and their families), the Southern Association of Pulmonologists, NEUMOSUR wants to transmit:

-treatment of bronchial asthma and COPD are perfectly standardized and collected by international regulations which have the support of the who (World Health Organization) and other agencies control.

-That employment for control of the asthma symptoms of beta broncodilatradores agonist of prolonged effect (LABA), partners always to an inhaled glucocorticoid, outweigh the potential risks of these medications.

-That the recommendations the U.S. agency FDA has recently issued on these medications are possibly related to their use in United States differs something that is done in Europe, due to the different configuration of the American health system. In this country, having to pay the patient full medication tends to save and to only use the bronchodilator, whose perceived effect is more or less immediate improvement of symptoms, to the detriment of its use combined with the corresponding inhaled steroid, whose anti-inflammatory action takes time to notice it.

-In Europe, for the treatment of bronchial asthma, the bronchodilator and inhaled corticoide come generally associated in the same device, what makes this problem at least.

-That said, is true that there is often a low awareness of the patient with regard to the control of his illness, which makes leaving treatment inhaled in the absence of symptoms. That is why NEUMOSUR considers key to establishing asthma education programs that include basic information about the disease and proper training in the use of inhaled therapy. This lack of adherence to therapy which, as it is known, is a major problem in many chronic respiratory diseases in asthma control is more common and also more relevant.

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International rare disease day.

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day international of the disease rarely.

-“Patients and researchers: partners for life!”

-28 February it is the third day of rare diseases.

Paris, February 2010. Around this event, hundreds of groups of patients and partners organize various activities to raise awareness about rare diseases and the 30 million people affected in Europe.

The rare disease day was released and is coordinated by the European Organisation for rare diseases – EURORDIS , a Federation representing more than 400 patient organisations in 42 countries. The campaign involves the national alliances for rare diseases and patient groups in 40 countries, both the EU and the USA, Canada, Argentina, Australia, New Zealand, Japan, China and Taiwan, among others.

The European Union considered a disease as rare when it affects less than 1/2000 citizens. 80% Has a genetic origin and most of the diseases affecting children. Most of rare diseases are serious, chronic and endanger life. Due to their low prevalence, expert doctors are also rare, knowledge is scarce, the provision of assistance is inadequate, research is limited and in very rare cases, there is a cure.

This year the theme focuses on the importance of research into rare diseases. The research represents the hope of millions of rare disease patients for which there is not a cure today. In the last decade, the scientific and medical progress has opened up new opportunities in the field of rare diseases research; rare diseases have made important contributions to research and development of treatments for most common diseases.

The 2010 rare disease day highlights the importance of collaboration between patients and researchers. A recent survey carried out by EURORDIS, among 300 patient organisations and representing more than a million patients in 29 countries, shows that patients are important catalysts of the research

The results of the survey will be presented at the European workshop organised by EURORDIS, 1 March 2010, in Brussels. This event, organized in conjunction with E-RARE ( http://www.e-rare.eu ) in collaboration with the European Commission, Orphanet ( http://www.orpha.net ) and EuroPlan ( http://www.europlanproject.eu ), will succeed in that research into rare diseases should be included in publicly funded projects.

According to the theme of this year, it invites patient organisations to nominate a scientist, who has helped in the progress of the investigation of his illness to the Hall of Fame in investigation of rare diseases (39 nominations so far). Patients on an individual basis may participate in the photo contest and video (more than 300 inscriptions until now) and share your story on Facebook (more than 6000 fans so far and more than 50 who join every day).

More information at: http://www.rarediseaseday.org

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Philips strengthens its offer to diagnosis of sleep through the acquisition of the business of the NAP group auto medición.

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Philips strengthens its offer to diagnosis of sleep through the acquisition of the business of the Group auto-medición siesta.


Amsterdam, Netherlands and Austria, February 2010.- Royal Philips Electronics (AEX: PHI, NYSE: PHG) announced the acquisition of the business of providing automated solutions score Somnolyzer 24 x 7 by the Group NAP in Vienna. This solution approved by the FDA and based on the most advanced technology and automatic score clinically tested in the market, will help to improve the productivity of the dream centres. The NAP group is a company clinical and research dedicated to software and specialized in solutions for measurement of polysomnography for sleep centers. The new acquisition will be integrated within part of the business of diagnoses of the dream within Philips Home Healthcare Solutions.

“ With the increase in the demand for evidence of sleep disorders, sleep, physical and technical centres need tools and services that offer a consistent and efficient improved measurement enabling them to focus on those parts of the study of sleep and other activities that require professional experience ”, said Don Spence, CEO of Philips Home Healthcare Solutions. “ Somnolyzer 24 x 7 solution is a strategic added value for the supply of diagnosis of the dream of Philips that allows us to offer a productivity improved in the sleep laboratory and directing further growth of the diagnosis of sleep for our customers and our business ”.

Expected that diagnostic sleep tests continue to grow in the coming years with a growing global awareness on the disorders of sleep such as Obstructive Sleep Apnea (OSA). In developed markets, the automatic measurement technology represents an opportunity to improve the productivity of the dream centres. This automated measurement technology can also allow arising centres of sleep in emerging markets to deal with the challenges of the increase in the demand for tests of the dream and the shortage of specialists of the dream.

The acquisition of the business of the NAP group auto-medición will further strengthen Philips leadership in the area of strategic growth of health care at home, holding the company’s expansion in the markets at the global level in the diagnosis of sleep and therapies SAOS.

The business of research and clinical testing services, which are not part of the acquisition, will remain and will continue in the Siesta group, based in Vienna.

* Polysomnography (PSG), also known as a dream studio, is a comprehensive recording of brain waves, eye movements, muscle activity, heart rate and breathing during sleep, used as a diagnostic tool in sleep medicine.

Royal Philips Electronics

Royal Philips Electronics of the Netherlands (NYSE: PHG, AEX: PHI) is a company whose activities cover all aspects of the care of the health and well-being, with the aim of improving the quality of life of people offering them the necessary innovations at the right time. As a leader in the health care, consumer and lifestyle, and lighting, Philips integrates the most advanced technologies and the latest design solutions always developed around the needs of the people and based on a profound knowledge of the consumer and your brand promise “ sense and simplicity ”. Headquartered in the Netherlands, Philips has a staff of approximately, 116.000 employees in over 60 countries. With a turnover of 26 billion euros in 2008, the company is world leader in systems for critical care and heart, and Telemonitoring in lighting solutions based on energy efficiency and new lighting applications, and consumer solutions to improve the quality of life and the variety of leisure activities of people, with a strong leadership position in flat TVs, shaving and men’s toilet, portable entertainment and oral care systems.

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Hospital Luton and Dunstable selects InterSystems Ensemble ® to integrate 50 critical applications.

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el Hospital Luton and Dunstable selects InterSystems Ensemble ® to integrate 50 applications critiques.

Madrid, February 2010.- InterSystems Corporation has announced that Hospital Luton and Dunstable, belonging to the British public agency NHS Foundation Trust, is using InterSystems Ensemble ® for an extensive project to rationalise its it architecture and implement a strategic approach for the integration of applications. NHS Foundation Trust selected Ensemble rapid integration platform to implement SOA (Service Oriented Architecture) and increase the flexibility of your service it. This strategy has allowed NHS Foundation Trust to transform its activity on the integration of applications into an opportunity for added value for the organization.

The project covers approximately 50 critical applications to access 3,000 users, including emergencies and accidents, patient management, pathology and observation electronics. The hospital intends to make important changes in its portfolio of applications, over the next few years, and hence which has been decided to ensure that it has the necessary flexibility in its systems you to manage this change without incidents in their services.

Use Ensemble-oriented SOA enables Luton and Dunstable to separate the functions of their applications between different services, which can be reused and combined in new ways. This gives the hospital a few services applications that are flexible and easy to adapt to the changing needs of users, reducing the costs of development and maintenance of new applications.

The Luton and Dunstable Hospital selected company Integrella Limited, Parner InterSystems Implementation, for implementation through architecture ESB (Enterprise Service Bus) suitable for the SOA approach. The project is a migration, in four phases, which will come into operation within 12 months. Marcus Davis, co-founder of Integrella, said “ have seen a common look and feel, in the departments of NHS Trust, to reduce dependence on manufacturers of integrated systems and increase the agility of the systems you. We are pleased to be able to help Luton and Dunstable implementing a framework for it, SOA-based ”.

Referring to the draft, Mark Englad, head of it for the Luton and Dunstable NHS Foundation Trust hospital, says that “ we are not unusual as an organization and our systems you have grown and evolved over the years to become a very complex environment. The mix of legacy systems and critical applications for patients means that we need an integration platform capable of helping us to create a flexible architecture that can be adapted, easily, to the nature of the changes that will be it for health in the future. ” addition, Mark adds that “ Ensemble works extremely well and we are delighted with the results obtained in the process of migration, up to this point. Knowledge of InterSystems, his experience and leadership in integration and, especially, interoperability based on standards based on HL7, make the company ideal for our needs ”.

Phil Birchall, of Development Director of Negocio Healtcare, of InterSystems, adds that “ Luton and Dunstable is a very important project for Integrella and for us. Shows how Ensemble provides a very flexible integration and capability the accumulated benefits to be gained ”.

About InterSystems

InterSystems Corporation is the world leader in software for the networked health. Headquartered in Cambridge, Massachusetts, and offices in 23 countries, InterSystems provides innovative products that enable the rapid development, deployment and integration of business applications.
InterSystems cache ® is a database of high-performance object-oriented that allows applications to be faster and more scalable. InterSystems Ensemble ® is a platform for seamless integration and development of connected applications. InterSystems HealthShare ™ is a platform that enables the rapid creation of electronic medical history for the exchange of health information in health services regional or national. InterSystems DeepSee ™ is a software that makes it possible to embed, real-time Business Intelligence applications, favoring the decision-making process.

InterSystems is the No.1 in databases and applications for health integration technologies. InterSystems products are used in thousands of hospitals and laboratories, including 21 hospitals Honor Roll of America ’ s Best Hospitals, according to the classification of U.S. News & World Report.

Cache can be requested or download through the InterSystems Web, where it is available in a free and full version.

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Surah Al-Rehman – The Ultimate Free Remedy for Incurable Diseases

(By Listening Only- 20 Minutes Only)

Kindly download the Surah “AL-REHMAN” (recited by Qari Abdul Basit without translation) from here.


Treatment Plan

Just Listen to it three times a day (morning, afternoon, evening) for seven consecutive days using following procedure:-


    Before listening:

  • Close your eyes
  • Feel your self in front of ALLAH Almighty/ God
  • Then listen to it with greater concentration and closed eyes

    When the recitation/ AUDIO is finished:

  • Open your eyes and take half glass of water
  • Close your eyes again and say “ALLAH” three times in your heart with deep affection/ love
  • Then drink the water with closed eyes in three sips

Surah Al-Rehman – The Ultimate Free Remedy for Incurable Diseases

(By Listening Only- 20 Minutes Only)

Kindly download the Surah “AL-REHMAN” (recited by Qari Abdul Basit without translation) from here.


Treatment Plan

Just Listen to it three times a day (morning, afternoon, evening) for seven consecutive days using following procedure:-


    Before listening:

  • Close your eyes
  • Feel your self in front of ALLAH Almighty/ God
  • Then listen to it with greater concentration and closed eyes

    When the recitation/ AUDIO is finished:

  • Open your eyes and take half glass of water
  • Close your eyes again and say “ALLAH” three times in your heart with deep affection/ love
  • Then drink the water with closed eyes in three sips