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Only 50 of the more than five thousand rare diseases available treatment.

only 50 of the more than five thousand rare diseases has treatment.

February 28 day world the EERR.

– more than 3 million Spaniards suffer any EERR. Approximately 8% of the Spanish population. Although if you consider people who are not diagnosed, the figure rises to 5 million, is one of the problems faced by these patients to late diagnosis, and in many cases erroneous.

– many of these patients have “ a great feeling of abandonment and orphanhoodbecause his illness has a low prevalence of social ”, said the DRA. Ana Villegas.

-Alexion Pharma marketed in 2007 the only treatment approved for patients of PNH, one of the so-called rare diseases, becoming so each of the 50 rare diseases with drug available.

Barcelona, February 2010. It is estimated that there are between five and eight thousand rare diseases. In many cases, sufferers are undiagnosed. Of them only a few approximately fifty have treatment appropriate to his pathology. “ rare diseases are a challenge and are a great clinical complexity at the time of his diagnosis ”, stated DRA. Ana Villegas, hematóloga of the Hospital Clínico San Carlos, in the context of the first Bio-talk organized by Alexion Pharma Spain, pioneer in the therapeutic approach of these minority ailments.

“ Have been so long without medication when they get always following the treatment ”, has underlined the DRA. Villegas, who has also reminded “ the importance of research in low-prevalence diseases such ”. The Act also has been Dr. Álvaro urban, which has demanded “ the involvement of politicians ” and “ resources to improve the situation of some patients often neglected and without diagnosis ”.

Dr. urban has also highlighted “ the transcendence of the associations of patients especially in such diseases, already that the patient feels alone and thinks that his illness is not socially shared ”. This referred to by Jordi Cruz, President of the Association of patients of PNH, who has insisted on the need that “ both administrations and private companies should follow encouraging research into these diseases, given that for a patient a drug is a light ”. “ How sad it is to have a disease and that there is no treatment for her ”, has been completed.

For its part, the Member of Congress Conchita Turruella has stated that “ administration involves more and more in improving the lives of this kind of sick, but that the work of the associations of patients is very important because they push the Executive to promote legal initiatives such as the research of treatments or psychological assistance to families ”.

Finally, the general director of Alexion Pharma Spain, Jordi Casals, explained that his company sold the only treatment that can improve the quality of life and avoid life-threatening risks to patients of PNH, one of the few rare diseases has drug for your condition.

Rare diseases

Low-frequency diseases and rare diseases (EERR) affects 5 people for every 10,000, according to the classification established by the European Union. This means that the maximum number of patients from a pathology can be considered rare would be 227.000 in the European Union and approximately 22,000 in Spain. In United States, the law provides as EERR one that affects less than 200,000 people.

There are 9,000 different pathologies, according to the latest figures published by the World Health Organization (who).

They are diseases potentially fatal or disabling long-term:

in 50% of the cases in which the vital prognosis is diagnosed an EERR is at risk. Credited for 35% of deaths in children under one year, 10% of deaths between 1 and 5 years and 12% in children aged 5 to 15 years.

65% Of low prevalence diseases are serious and highly disabling. They are characterized by a beginning early in life – 2 of every 3 diseases appear before the two years — they involve chronic pain in 1 of every 5 patients and involve a motor, sensory or intellectual deficit in half the cases.

80% Of cases are congenital (born with them). Also, they usually involve physical malformations or gradual deterioration of motor, sensory and intellectual capacities.

EERR in Spain

More than 3 million Spaniards suffer any EERR. Approximately 8% of the Spanish population. Although if you consider people who are not diagnosed, the figure rises to 5 million, is one of the problems faced by these patients to late diagnosis, and in many cases, wrong.

In all Spain, there are some 500,000 children affected some EERR.

It is estimated that 12% of hospital discharges recorded some EERR diagnosis, which means 445,000 patients each year in Spain.

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More than 3.000.000 of Spanish with a rare disease.

more than 3,000,000 of Spanish with a disease rare.

Federation ASEM joins the world day of rare diseases (EERR).

– today February 28 will be held throughout the world the world day of rare diseases and Federation ASEM joins this initiative of the European Organisation for rare diseases (EURORDIS) and the Spanish Federation of rare diseases (ERDF), which seek to improve the quality of life of persons suffering from an EERR.

Barcelona, February 2010. Neuromuscular diseases (MNA), with more than 50,000 concerned, constitute the largest group within the rare diseases in Spain. This commemorative date will also serve to raise awareness and educate the society in general, medical and pharmaceutical industry and Governments on the need to ensure the rights of persons living with a rare disease.

The EERR World Day celebration will focus on giving visibility to the message that the public health services must be improved in many ways to meet the needs of persons suffering from an ENM, with measures such as include palliative treatment with physiotherapy required by these patients to rehabilitation in the portfolio of services of the national system of health (SNS)indispensable for them and their quality of life.

Under the reference and research centres! theme for rare diseases Federation ASEM joins the initiative of ERDF intending to get a public health care free and tailored to the needs of persons with MNAS, reference centres and units multi-disciplinary, one claims that the ASEM movement leads manifesting since its founding 25 years ago and which today still struggling from the force as gives the Union of their 20 associations spread by the Spanish territory and more than 8,000 partners.

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Many rare diseases improve with physiotherapy treatments.

numerous rare diseases improve with treatments of physiotherapy.

On the occasion of the celebration, tomorrow, the day international of the disease rarely.

-physiotherapeutic treatments have been demonstrated scientifically the prevention, cure or improvement of the conditions of health of many people with rare diseases

-physical therapy helps people with rare diseases by massage, therapeutic exercise, the magnet therapy or electrotherapy, among other disciplines physiotherapy

Madrid, February 2010.- physical therapy contributes to improving the State of health of many people with rare diseases, he reminded the General Council of physiotherapists schools of Spain (CGCFE) on the occasion of the international day of rare diseases.

“ Physiotherapy helps to cure, prevent or improve the health and living conditions of many people with rare diseases through a wide range of treatments, physiotherapy, the massage, therapeutic exercise, the magnet therapy and electrotherapy, among others ”, said the President of the General Council of colleges of physiotherapistsPedro Borrego.

Different disciplines physiotherapy benefit, especially, the symptoms of rare disorders of neuromuscular type. In addition, it also improves the State of patients with congenital and morphological alterations.

Physiotherapy has scientifically proven their benefit in rare diseases affecting the skin and the lungs where respiratory physiotherapy is most used increasingly.

In addition, the improvement in the quality of life for these patients is another objective pursued by physiotherapy, obtained through neuromotor and postural techniques.

“ Physiotherapeutic treatments fall within the health care service of these diseases, what we need to facilitate the access of people with rare diseases to physiotherapy in a uniform manner in all Spain, always and when these are treatable ”, explained the Vice-President of the CGCFE, José Antonio Martín Urrialde.

CGCFE

The General Council of physiotherapists schools of Spain (CGCFE) is the body that represents more than 40,000 physiotherapists, in Spain, dealing with the common goal of promoting the health of citizens.

In addition, orders the profession, guardianship the interests of physiotherapy, as well as its optimal implementation and universalization.

Physiotherapists are ‘ health professionals ’, in accordance with current legislation, accredited with the Bachelor degree in physical therapy, taught at 43 universities and holders of knowledge and skills designed to benefit the health of the population. Moreover, every time there is a greater number of doctorates and masters, which ensures a high qualification.

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One of every five people affected by rare diseases takes up to 10 years to be diagnosed.

one of every five people affected by rare diseases takes up to 10 years to be diagnosed.

February 28: day of the global disease rare.

-rare neurological diseases are home mainly in children, although they occur at all ages, and are rare because of its low frequency and its diagnostic difficulties and treatment

– it is estimated that you between 6% and 8% of the world’s population is affected by these diseases. In Spain, more than 3 million Spaniards suffer any of these ailments

– therefore the Spanish Neurology Society calls for more resources to advance research and treatment of rare diseases

Madrid, February 2010- today marks the world day of rare diseasesthose diseases with danger of death or chronic disability who have a low rate, less than 5 people per every 10,000 inhabitants, following the definition of the European Union. In addition, present many difficulties in diagnosis and follow-up, that when assessing a patient first symptoms are discarded diseases most frequently. In this sense, it is estimated today, one in five people affected by rare diseases takes up to 10 years to be diagnosed, hindering the prevention and treatment of disease. “ During this long process, they may receive inaccurate diagnoses and lack of knowledge with society in general and even health workers makes feel misunderstood, isolated in health care ” says the DRA. Maite Mendioroz, Member neurologist of the Committee of rare diseases of the society Spanish of Neurology (SEN).

Although its origin is unknown, its inception occurs during childhood and due to the small number of people affected, pose difficulties in the investigation that they lack most effective treatments to between 6% and 8% of the world’s population and more than 3 million people in Spainthey suffer from any of these ailments. It is why from the Sociedad Española de Neurología (SEN) consider necessary the existence of greater means and resources to advance in the research of these diseases. In addition to this, as asserted by the DRA. Mendioroz “ currently, there are only treatments available to treat the symptoms, and the few that are designed to modify the evolution of the disease, require bureaucratic processes sometimes incomprehensible for the patient ”.

Today, there are neurological diseases such as the Commonwealth, with 6,000 affected in our country, that Yes are being investigated, but there are many others that do not. These include neuromuscular diseases (Duchenne, Dystrophies, ELA), diseases by metabolic disorders, mitochondrial diseases (leucodistrofias), the family spastic paraparesis, bone and brain malformations, the malignant epilepsy of childhood, espinocerebrales Lazo and movement disorders such as generalized distonias, idiopathic or Korea of Huntington.

“ But fortunately, this approach is changing, and patients and affected families are being more and more attention of health policies in Western societies ” concludes the DRA. Mendioroz. Thus, our country, last year launched the National Plan for rare diseases. Behind this turn we find the effort of patients associations have done for years, the pharmaceutical industry seeking new areas to expand, the medical interest in the study of these “ unknown ” diseases and the growing recognition by health institutions of the need to address in a comprehensive manner to these patients. It should be recalled that, because of their special characteristics rare diseases affect not only the individual but his entire family.

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10 tips to avoid injuries during the operation bikini.

10 tips to avoid injury during operation bikini.

-SOMACOT (Matritense society of orthopaedic surgery and Traumatology) has launched a series of Councils in order to avoid possible injuries during the so-called “ operation bikini ”.

-Heat, follow a few routines, avoid obsessing, not to exceed the exercise, learn about our body or stretching are some of the tips provided by SOMACOT to reduce the risk of suffering an injury.

Madrid, may 2010.- SOMACOT, the Matritense society of orthopaedic surgery and Traumatology, has made public a list of ten tips to prevent injury during the “ operation bikini ”.

According to SOMACOT, spasms, strains, fractures of ligaments, sprains, dislocations and fractures are the most common injuries that can cause excessive exercise. Knees, ankles, shoulders, and wrists are the joints that suffer most. For its part, biceps, triceps, quadriceps and abdominal muscles more problems experience.

In the words of Dr. José Miguel Guijarro, President of SOMACOT “ with good weather a lot of people will enter the rush to look athletic and stylish body. The arrival of the summer is the kick-off for aggressive diets and uncontrolled exercise sessions. However, trying to get a body “ ten ” in a few weeks, when throughout the year there has been nothing to stay in shape is counterproductive, since an irrational practice of sports can cause many injuries. ”

tips. THE TRAUMATOLOGISTS RECOMIENDAN:

not obsessed: in this time of year people suffer a disturbing obsession with take care of your body and have it ready. It is important to be aware that as much as one machaque his body during a month, it will not achieve extraordinary results. Exercise is healthy, but always made in a controlled manner and avoiding excesses.

Heat: Before engaging in any physical activity is recommended to prepare the body. Start with a few simple exercises that activate muscles and prepare them for the physical wear and tear that will suffer then. With 15 or 20 minutes of previous warming we will increase muscle flexibility and articulate, reflexes, the oxygenation of the blood and heart rate.

Exercise gradually: You can claim to do on a day that has not been done for months, no pass not to move a muscle to spend hours in the gym. The exercise should take place gradually. We should start doing exercises little wear and tear or for a short period of time, to gradually to increase the intensity and duration of physical activity.

Dosage: If you are not usual sportsman, subjecting the body to Marathon days of fitness can be detrimental. More appropriate is to carry out this kind of exercises n maximum of 2 or 3 times per week, and complete the week with other less demanding physical activities and involving no displacement at a gym, is enough to do abdominal, do squat against the wall, push-ups, or simply walk.

Follow the advice of a coach físico: The most common is to launch to exercise without knowing very well what we should, above all if we went to the gym. It is important to be left to advise a physical trainer to tell us what exercises are best suited to our Anatomy, the correct way to perform them, and the time we devote to every routine.

Follow a tabla: The exercise of uncontrolled manner is useless. Little exercise is better quality than much and little cash. The right thing is to follow a few routines, a few tables that accommodate the needs of each person and exercising the muscles in a controlled way and without hubris.

Know your cuerpo: It is important to know the weaknesses and possibilities of our body at the time of exercise. Our age, medical history and current state of form are variables which we must take into account before a demanding physical activity. Be clear when say enough is enough avoid us more of one problem.

Do estiramiento: The realization of stretching one after any physical activity is often overlooked but is shown to spend about 10 or 15 minutes to stretch muscles after exercise prevents overload and favours the muscular recovery.

Eating properly alimento: Many people associate operation bikini with decrease in food intake, something that should only be done in a controlled way. If in addition, to this we add our physical activity increased, the risk of problems increases. Carbohydrates, proteins, vitamins, minerals (calcium, potassium and phosphorus) or antioxidants should not miss on any diet, as they help to relaxation and recovery of the muscles. The right thing is to try to burn about 500 calories a day to exercise.

Go to especialista: It is better to prevent than to cure. It is recommended that before any possible doubt, persistent pain, or any possible symptoms appearing during the practice of exercise go to specialists. They evaluate and recommend the best solution to your problem.

About SOMACOT

The Matritense society of orthopedic surgery and Traumatology brings together more than 400 industry specialists who develop their activity in the community of Madrid. SOMACOT was created 23 years ago, in 1987, with the aim of promoting the study, research and development of orthopedic surgery and Traumatology at the scientific level and encourage the professional development within its autonomous.

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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