Rubinstein Taybi syndrome and its association with multiple Pilomatrixomas.
Wednesday, April 22, 2009
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Rubinstein Taybi syndrome and its association with multiple Pilomatrixomas.
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position and liaison for parents of children with rare diseases
http://www.reddeamor.org/padres-en-argentina
Source: http://www.reddeamor.org/
We are a group of Mothers who have experienced the terrible feeling of loneliness and helplessness that leads to discover that our child or loved one is a child with special needs. We
anguished face of the unknown and we are overwhelmed with questions unanswered. With great effort, we inform, learn, meet the needs of our children and the treatments available to help improve their quality of life.
we know what it feels like, we decided to put our experience to others.
offer our learning in this way and a helping hand to find the medical and therapeutic resources necessary to ensure that your child can develop their own capacities to the fullest. Many times there is more to be done even if you feel, think or tell you otherwise.
His life experience may also help others. For networks that serve to support and share information.
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Love Autism Network
Opens at the Hospital Gregorio Marañón the first comprehensive treatment unit for autism
Spain's disease affects over 250,000 people, one for every 160 inhabitants
Publication Date: April 17, 2009 By
pioneer in Spain, the Hospital Gregorio Marañón in Madrid has launched a comprehensive treatment unit for the care of patients with autism. It thus seeks to address the medical needs of these patients and improve communication with other medical services of the hospital.
The objective of this initiative is to "eliminate barriers" that these patients have access when the health system, for which the unit has a team of psychiatrists and psychologists since it went into operation on 1 April, has treated 30 people.
The unit is to receive referrals of patients with this condition to receive direct care by family doctors or any public network specialist. After presenting a simple report to justify the diagnosis, each patient is channeled "giving priority to those most in need," said the coordinator of the unit, Mara Parellada.
250,000 affected in Spain
Autism is a chronic neuropsychiatric disorder that affects the ability to communication and language, they had difficulty in social relationships. This makes the detection of other diseases and necessitates "identify and register" their attention, said Parellada.
Spain This disease affects more than 250,000 people-one in 160 English-, but is underdiagnosed and more reliable data are obtained through the records of the partnerships. This prevents them from receiving the treatment they need, said the expert.
These patients have more complications organic, as having a developmental neurobiological other pathologies that are associated with this disorder, such as problems with chromosomal or metabolic reactions, said Parellada. Furthermore, having altered nervous system there are other specific syndromes such as alterations of fragile X syndrome, tuberous sclerosis and other diseases associated with autistic phenotypes.
Opens at the Hospital Gregorio Marañón the first comprehensive treatment unit for autism
Spain's disease affects over 250,000 people, one for every 160 inhabitants
Publication Date: April 17, 2009 By
pioneer in Spain, the Hospital Gregorio Marañón in Madrid has launched a comprehensive treatment unit for the care of patients with autism. It thus seeks to address the medical needs of these patients and improve communication with other medical services of the hospital.
The objective of this initiative is to "eliminate barriers" that these patients have access when the health system, for which the unit has a team of psychiatrists and psychologists since it went into operation on 1 April, has treated 30 people.
The unit is to receive referrals of patients with this condition to receive direct care by family doctors or any public network specialist. After presenting a simple report to justify the diagnosis, each patient is channeled "giving priority to those most in need," said the coordinator of the unit, Mara Parellada.
250,000 affected in Spain
Autism is a chronic neuropsychiatric disorder that affects the ability to communication and language, they had difficulty in social relationships. This makes the detection of other diseases and necessitates "identify and register" their attention, said Parellada.
Spain This disease affects more than 250,000 people-one in 160 English-, but is underdiagnosed and more reliable data are obtained through the records of the partnerships. This prevents them from receiving the treatment they need, said the expert.
These patients have more complications organic, as having a developmental neurobiological other pathologies that are associated with this disorder, such as problems with chromosomal or metabolic reactions, said Parellada. Furthermore, having altered nervous system there are other specific syndromes such as alterations of fragile X syndrome, tuberous sclerosis and other diseases associated with autistic phenotypes.
Saturday, April 11, 2009
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recommend: ADEEI
Association for the Development of Special Education and Integration, is an NGO, civil non-profit organization whose priority is to develop actions for persons with disabilities from a response for inclusion inclusive school and social work.
Arcos 3063 Capital Federal Tel 2362 4702 Web: www.adeei.org.ar 
Arcos 3063 Capital Federal Tel 2362 4702 Web: www.adeei.org.ar
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From UTN Rosario
Solutions people with disabilities from
UTN Rosario Central Research and Development Special Technologies (CEdit) promotes technical and problemasde custom programs for various disabilities. The best known case of its achievements in Miracles ezel Girard, a girl of 12 who amputated arm models: the CEdit built a structure that allows you to use unaPC and eat alone.
He also designed a bathroom for the teen puedahigienizarse and brush teeth without assistance. Alejandro Meneses can only move one finger and wrist. We designed unsoftware so you can write and communicate.
The CEdit work 21 years ago along which they said worked in more specific implementation projects. The Centre is the country detodo patients with learning disabilities, hearing loss syndrome deatención dispersed, autism, Down syndrome, blindness and physical otrasdiscapacidades.
"Technology has launched a wide brindaposibilidades unexpected way," says a InfoUniversidades José LuisAlbano, director of CEdit, adding: "Some people only move lanariz and can handle a computer, connect to the world member and to communicate with others, handled alone on the street or washing sinayuda. These possibilities mean major changes in their lives. "
work begins with a patient interview and case study and then begin the process of designing and creating software that target specific yaparatologías independence and improve thequality of life of patients. The best known case is that of Milagros estasaplicaciones Girard, a girl of 12 añosque Santa Fe in April 2006 suffered the amputation of the arms after quevolcó the group he was traveling.
The CEdit built a estructuraque, resting on the shoulder of the baby, lets you use unacomputadora and eat alone. Designed a special bathroom, so WHAT CAN sanitized and brush your teeth without assistance. If this technology bienmucha also developed privately, loimportante of this Center is that by relying on a universidadpública, there is no charge to the patient. After that began the development of technology in the CEdit, otroscentros the country followed the same line. Recently formed unare of universities cooperating with each other. For example, the Faculty of Engineering of the Universidad Nacional de Rosario (UNR) works enbarreras flexible architecture and housing.
For its part, The Faculty of Law assists with the legal issues and the Latin American Educational Center Universidaddel (UCEL) cooperation from the deeconomía.
At the National University of Cordoba is investigating how to best anti-bedsore mattresses and in Buenos Aires, and Academy Finland Favaloro dedicated cardiac issues. Thus formed a circle where conocimientosprofesionales involve the effort of the disabled, the containment and alientode parents and the facilities of the institution. 
Solutions people with disabilities from
UTN Rosario Central Research and Development Special Technologies (CEdit) promotes technical and problemasde custom programs for various disabilities. The best known case of its achievements in Miracles ezel Girard, a girl of 12 who amputated arm models: the CEdit built a structure that allows you to use unaPC and eat alone.
He also designed a bathroom for the teen puedahigienizarse and brush teeth without assistance. Alejandro Meneses can only move one finger and wrist. We designed unsoftware so you can write and communicate.
The CEdit work 21 years ago along which they said worked in more specific implementation projects. The Centre is the country detodo patients with learning disabilities, hearing loss syndrome deatención dispersed, autism, Down syndrome, blindness and physical otrasdiscapacidades.
"Technology has launched a wide brindaposibilidades unexpected way," says a InfoUniversidades José LuisAlbano, director of CEdit, adding: "Some people only move lanariz and can handle a computer, connect to the world member and to communicate with others, handled alone on the street or washing sinayuda. These possibilities mean major changes in their lives. "
work begins with a patient interview and case study and then begin the process of designing and creating software that target specific yaparatologías independence and improve thequality of life of patients. The best known case is that of Milagros estasaplicaciones Girard, a girl of 12 añosque Santa Fe in April 2006 suffered the amputation of the arms after quevolcó the group he was traveling.
The CEdit built a estructuraque, resting on the shoulder of the baby, lets you use unacomputadora and eat alone. Designed a special bathroom, so WHAT CAN sanitized and brush your teeth without assistance. If this technology bienmucha also developed privately, loimportante of this Center is that by relying on a universidadpública, there is no charge to the patient. After that began the development of technology in the CEdit, otroscentros the country followed the same line. Recently formed unare of universities cooperating with each other. For example, the Faculty of Engineering of the Universidad Nacional de Rosario (UNR) works enbarreras flexible architecture and housing.
For its part, The Faculty of Law assists with the legal issues and the Latin American Educational Center Universidaddel (UCEL) cooperation from the deeconomía.
At the National University of Cordoba is investigating how to best anti-bedsore mattresses and in Buenos Aires, and Academy Finland Favaloro dedicated cardiac issues. Thus formed a circle where conocimientosprofesionales involve the effort of the disabled, the containment and alientode parents and the facilities of the institution.
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guides, and audio guides signoguías
Guides, signoguías and audio guides, in one device
The main novelty of the guides ensures GVAM as a deprensa note is that this is a universal device that allows deaf accesotanto visitors with visual disabilities GVAM or disability without the same support region on the advantages of audio guides, interactive information points and signoguías.
The project was made possible through the collaboration of a large Numberof organizations. CNSE Foundation, Fundación ONCE, Dos de Mayo, CESyA, Universidad Carlos III de Madrid, Ministry of Culture yMinisterio of Education, Social Policy and Deporte.A then tomorrow March 31 there will be a demonstration in April the Museum LaSala Costume-CIPE Madrid elfuncionamiento to verify this system. The GVAM have a large touch screen that is simultaneously posiblemostrar all kinds of multimedia content (comoanimaciones, videos and 3D real-time), while maintaining laergonomía and low weight.
Its main novelty is that they have been creadaspensando in all types of audiences: the elderly, children, people with or sindiscapacidad visual, auditory or physical, and so on. In this sense, pre-configuration allows deaccesibilidad fundamental resource for the group of people with disabilities with sensory impairment, such as sign language, subtitling, audionavegación.Asimismo laaudiodescripción or allow the integration of games and different types devisita suited to the needs of visitors (tiempodisponible, interests, etc..), as museum professionals (educational tours, specialized or general). The GVAM are the result of over two years of research académicay business, enterprise Dos de Mayo and CESyA (English Center deSubtitulado and Audio Description), under the Royal Patronage sobreDiscapacidad (Ministry of Education and Science) and management skills at the University Carlos III of Madrid.
The other two project partners, CNSE Foundation and Fundación ONCE, hanproveído of users for testing with the device and hanvalidado from the perspective of universal design. The project has sidofinanciado by the Ministry of Industry, Commerce and Tourism calls travésde AVANZA, and has enjoyed the cooperation of laSubdirección State Museums of the Ministry of Culture, queh loan facilities and the contents of the Museum of Costume - three day development of this prototype.
Source: Journal 
Guides, signoguías and audio guides, in one device
The main novelty of the guides ensures GVAM as a deprensa note is that this is a universal device that allows deaf accesotanto visitors with visual disabilities GVAM or disability without the same support region on the advantages of audio guides, interactive information points and signoguías.
The project was made possible through the collaboration of a large Numberof organizations. CNSE Foundation, Fundación ONCE, Dos de Mayo, CESyA, Universidad Carlos III de Madrid, Ministry of Culture yMinisterio of Education, Social Policy and Deporte.A then tomorrow March 31 there will be a demonstration in April the Museum LaSala Costume-CIPE Madrid elfuncionamiento to verify this system. The GVAM have a large touch screen that is simultaneously posiblemostrar all kinds of multimedia content (comoanimaciones, videos and 3D real-time), while maintaining laergonomía and low weight.
Its main novelty is that they have been creadaspensando in all types of audiences: the elderly, children, people with or sindiscapacidad visual, auditory or physical, and so on. In this sense, pre-configuration allows deaccesibilidad fundamental resource for the group of people with disabilities with sensory impairment, such as sign language, subtitling, audionavegación.Asimismo laaudiodescripción or allow the integration of games and different types devisita suited to the needs of visitors (tiempodisponible, interests, etc..), as museum professionals (educational tours, specialized or general). The GVAM are the result of over two years of research académicay business, enterprise Dos de Mayo and CESyA (English Center deSubtitulado and Audio Description), under the Royal Patronage sobreDiscapacidad (Ministry of Education and Science) and management skills at the University Carlos III of Madrid.
The other two project partners, CNSE Foundation and Fundación ONCE, hanproveído of users for testing with the device and hanvalidado from the perspective of universal design. The project has sidofinanciado by the Ministry of Industry, Commerce and Tourism calls travésde AVANZA, and has enjoyed the cooperation of laSubdirección State Museums of the Ministry of Culture, queh loan facilities and the contents of the Museum of Costume - three day development of this prototype.
Source: Journal
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Sign Assistants Training for people with disabilities, families and organizations working in this area
Year 2009 - Annual Course - Training of assistants for people with disabilities, families and organizations working in this area. Organizers: University CAECE - APSE Association for the Prevention Health and Education Start Date: 18 Abril.Charla Information: March 14 - 10 hs. Location: Junín 516 - GCBA. - (011) 52 ... 14 to 19 hours. (011) 5217 - 7887 - eroisen@caece.edu.ar - apsear@yahoo.com - www.caece.edu.ar - www.apseweb.org.ar Law
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Assistants Training Basic Benefits Scheme for People with Disabilities
26,480 - System basic benefit for people with disabilities with -
incorporates paragraph d) to article 39 Law 24,901 Basic Benefits Scheme for Persons with Disabilities Act
26,480 Adds subsection d) of Article 39 of the Law No. 24,901. Attested: March 4, 2009. Fact Enacted: March 30, 2009. The Senate and Chamber of Deputies of Argentina enCongreso meeting, etc. Act enact as: * SECTION 1 *- incorporated as subsection d) of Article 39 of the Leyn No. 24,901 as follows: / d) Home care: For exclusive indication equipointerdisciplinario owned or hired by the entidadesobligadas, people with disabilities receive a home-help apoyosbrindados to promote autonomous suvida, prevent institutionalization or shorten hospitalization lostiempos. The team said interdisciplinarioevaluará the necessary support, including the same intensity and DURATION and supervision, periodic evaluation sureformulación, continuity or termination of assistance.
house wizard capacitaciónespecífica must have the appropriate certification endorsed by the competent authority expedidapor. / * SECTION 2 *- This Law shall be regulated models within NINETY (90) days of enactment. * SECTION 3 *- communicated to the Executive. / DADA IN THE CHAMBER OF * THE ARGENTINE CONGRESS, IN BUENOS AIRES, A FOUR DAY OF MARCH * THE YEAR TWO THOUSAND NINE. / REGISTERED UNDER THE NUMBER 26480 - Julio Cobos CC. - EDUARDO A. Fellner. - Enrique Hidalgo. - John H. Estrada. Source: BO 06/04/2009 
incorporates paragraph d) to article 39 Law 24,901 Basic Benefits Scheme for Persons with Disabilities Act
26,480 Adds subsection d) of Article 39 of the Law No. 24,901. Attested: March 4, 2009. Fact Enacted: March 30, 2009. The Senate and Chamber of Deputies of Argentina enCongreso meeting, etc. Act enact as: * SECTION 1 *- incorporated as subsection d) of Article 39 of the Leyn No. 24,901 as follows: / d) Home care: For exclusive indication equipointerdisciplinario owned or hired by the entidadesobligadas, people with disabilities receive a home-help apoyosbrindados to promote autonomous suvida, prevent institutionalization or shorten hospitalization lostiempos. The team said interdisciplinarioevaluará the necessary support, including the same intensity and DURATION and supervision, periodic evaluation sureformulación, continuity or termination of assistance.
house wizard capacitaciónespecífica must have the appropriate certification endorsed by the competent authority expedidapor. / * SECTION 2 *- This Law shall be regulated models within NINETY (90) days of enactment. * SECTION 3 *- communicated to the Executive. / DADA IN THE CHAMBER OF * THE ARGENTINE CONGRESS, IN BUENOS AIRES, A FOUR DAY OF MARCH * THE YEAR TWO THOUSAND NINE. / REGISTERED UNDER THE NUMBER 26480 - Julio Cobos CC. - EDUARDO A. Fellner. - Enrique Hidalgo. - John H. Estrada. Source: BO 06/04/2009
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