EURORDIS - Rare Diseases Europe, is a non-governmental patient-driven alliance of rare disease patient organisations representing 798 rare diseases patient organisations in 69 countries. We are dedicated to improving the quality of life of all people living with rare diseases in Europe
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EURORDIS - The Voice of Rare Disease Patients in Europe | eurordis.org Reviews
https://eurordis.org
EURORDIS - Rare Diseases Europe, is a non-governmental patient-driven alliance of rare disease patient organisations representing 798 rare diseases patient organisations in 69 countries. We are dedicated to improving the quality of life of all people living with rare diseases in Europe
EURORDIS Gala Dinner | Solidarity & Hope for Rare Disease Patients Throughout Europe
Celebrating Rare Disease Day. Solidarity and Hope for Rare Disease Patients Throughout Europe. What is a rare disease? Use of Collected Funds. Theme & Programme. Patrons & Committees. Rare Disease Day Ambassador. Photos & Media. The European Organisation for Rare Diseases (EURORDIS) is delighted to announce its fourth fundraising Gala Dinner to be held in Brussels, Belgium: capital city of the European Union. This event will take place on 24 February 2015. What is a rare disease? See a highlight of the E...
Eurordis RareTogether Knowledge Base | Capacity Building for Networks of Rare Disease Patient Organisations
Eurordis RareTogether Knowledge Base. Capacity Building for Networks of Rare Disease Patient Organisations. Advocacy at a European level. 8 basic steps to setting up a European Federation. Is there a best country to register a Federation? Look for other national groups. Pro and Contra European Federations. Code of Good Practice. Cross border tax relief. European Commission Call for proposals. Financial support by Commercial Companies. Read more about our aims. 8211; your aims! Advocacy at a European level.
eurordis.org
EURORDIS - A Voz das pessoas com doenças raras na Europa
https://www.eurordis.org/pt-pt
Entre em contacto connosco. A Voz das Pessoas com. Entre em contato connosco. O que é uma doença rara? Encontrar informação ou ajuda. Uma prioridade de saúde pública. O que é um Medicamento Órfão? Promoção do desenvolvimento de medicamentos órfãos. Designação como medicamento órfão. Melhorar a segurança dos seus medicamentos. Envolvimento dos representantes dos doentes. Avaliação das Tecnologias da Saúde (HTA). Acesso aos medicamentos órfãos. Viver com uma Doença Rara. DIA EuroMeeting Fellowship programme.
EURORDIS - La voce delle persone colpite da malattie rare in Europa
https://www.eurordis.org/it
La voce dei malati. A proposito di Eurordis. Che cosa è una malattia rara? Trova informazioni o supporto. Una priorità di salute pubblica. Promuovere lo sviluppo di farmaci orfani. Designazione di farmaco orfano. Migliora la sicurezza dei tuoi farmaci. Il coinvolgimento dei rappresentanti dei malati. Valutazione delle tecnologie sanitarie. Accesso ai farmaci orfani. Elenco delle ultime designazioni di farmaco orfano e/o autorizzazioni all’immissione in commercio. Vivere con una Malattia Rara. Nuove racco...
EURORDIS - La voz de los Pacientes con Enfermedades Raraas en Europa
https://www.eurordis.org/es
La voz de los Pacientes con. Qué es una enfermedad rara? Encuentra información o ayuda. Una prioridad de salud pública. Política de la UE. Qué es un medicamento huérfano? Promover el desarrollo de un medicamento huérfano. Designación de un Medicamento Huérfano. Mejora la seguridad de tus medicamentos. Implicación de los defensores de los pacientes. Evaluación de Tecnología Sanitaria. Acceso a los medicamentos huérfanos. Vivir con una enfermedad rara. DIA EuroMeeting Fellowship programme. OlOslo2017, la 1...
EURORDIS - La voix des patients atteints de maladies rares en Europe
https://www.eurordis.org/fr
La voix des patients atteints. A propos d'EURORDIS. Qu'est-ce qu'une Maladie Rare? Une priorité de santé publique. Qu'est ce qu'un médicament orphelin? Encourager la mise au point de nouveaux medicaments. Désignation des médicaments orphelins. Rendez vos médicaments plus sûrs. Le rôle d'EURORDIS. L’implication des représentants des patients. Accès aux médicaments orphelins. Évaluation des technologies de la santé. Vivre avec une Maladie Rare. DIA EuroMeeting Fellowship programme. OlOslo2017, 13e Conféren...
EURORDIS Photo Contest 2016
https://www.eurordis.org/photo-contest
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Treatments
http://erdheim-chester.org/treatments
New ECD trials opening! Follow the link below for "Clinical Trials for ECD Treatment" to learn more about the new trials accepting ECD patients. How is Erdheim-Chester Disease Treated? Because of the rarity of this disease, clinical trials. Interferon-alpha, normally considered the “first-line” of treatment, with a number of papers available in www.pubmed.gov. For more papers describing interferon treatment for ECD, see the Technical Papers. BRAF-inhibitors (vemurafenib, dabrafenib). Is now open in the U...
enbuscadelapanacea.blogspot.com
En busca de la Panacea: Carbono y silicio contra el SIDA
http://enbuscadelapanacea.blogspot.com/2009/12/carbono-y-silicio-contra-el-sida.html
En busca de la Panacea. En busca de la Panacea" es un espacio informativo sobre salud, medicina, y bienestar. Lunes, 21 de diciembre de 2009. Carbono y silicio contra el SIDA. Dos investigadores del Departamento de Química Inorgánica de la Universidad de Alcalá. La clave de este novedoso tratamiento estaría en los dendrímeros carbosilano. Así, "al facilitar la inhibición del virus, frenan su expansión hacia otras células del organismo”. A las mejores patentes. En este certamen el jurado destacó "la r...
Bone marrow transplant
http://www.fondation-sanfilippo.org/index.php/en/sanfilippo-disease/supported-projects/bone-marrow-transplant
Conception of chemical chaperones. Lysosomal enhancement as a therapeutic strategy for MPS. Dev of inhibitors of galactosidase β and the glucuronidase β. Gene Therapy for MPS IIIA and B. Prévention de l'accumulation intracellulaire de fragments de sulfate d'héparane. Call for tender for Swiss and foreign researchers. Foundation Galas and Congress. Links and Documents to download. Noé and Noa Book. Internet website of associations or foundations. Jump to Main Navigation and Login. Adeline A Lau,correspond...
welcome to the Sanfilippo Foundation Switzerland website
http://www.fondation-sanfilippo.org/index.php/en/home
Conception of chemical chaperones. Lysosomal enhancement as a therapeutic strategy for MPS. Dev of inhibitors of galactosidase β and the glucuronidase β. Gene Therapy for MPS IIIA and B. Prévention de l'accumulation intracellulaire de fragments de sulfate d'héparane. Call for tender for Swiss and foreign researchers. Foundation Galas and Congress. Links and Documents to download. Noé and Noa Book. Internet website of associations or foundations. Jump to Main Navigation and Login. The purpose of the Found...
The Foundation, its purpose and organization
http://www.fondation-sanfilippo.org/index.php/en/the-sanfilippo-foundation
Conception of chemical chaperones. Lysosomal enhancement as a therapeutic strategy for MPS. Dev of inhibitors of galactosidase β and the glucuronidase β. Gene Therapy for MPS IIIA and B. Prévention de l'accumulation intracellulaire de fragments de sulfate d'héparane. Call for tender for Swiss and foreign researchers. Foundation Galas and Congress. Links and Documents to download. Noé and Noa Book. Internet website of associations or foundations. Jump to Main Navigation and Login. Frederic Morel, Founder.
Honorary Chairpersons
http://blackpearl.eurordis.org/committee-members/honorary-chairmen
EURORDIS Awards and Black Pearl Evening. Celebrating Rare Disease Day, Solidarity and Hope for Rare Disease Patients Throughout Europe. What is a rare disease? Use of Collected Funds. Patrons & Committees. Rare Disease Day Ambassador. Photos & Media. Patrons & Committees. Rare Disease Day Ambassador. Chair of the Committee on Industry, Research and Energy at the European Parliament, former President of the European Parliament and former Prime Minister of Poland. Chair of the Committee on Environment,.
Testimonies
http://blackpearl.eurordis.org/committee-members/testimonies
EURORDIS Awards and Black Pearl Evening. Celebrating Rare Disease Day, Solidarity and Hope for Rare Disease Patients Throughout Europe. What is a rare disease? Use of Collected Funds. Patrons & Committees. Rare Disease Day Ambassador. Photos & Media. Patrons & Committees. Rare Disease Day Ambassador. Rare diseases are not really rare: their number is huge and is expected to grow. Italy is committed both in financing research and genetic studies and in supporting patients and their families. A design by U...
Pterygium Syndrome, Multiple - NORD (National Organization for Rare Disorders)
http://rarediseases.org/rare-disease-information/rare-diseases/byID/963/viewAbstract
Information & Resources. Resources & FAQs. State Health Insurance Information. Information for Your Doctor. News About Patient Recruitment. Help to Access Medications. Find a Patient Organization. Find a Patient Meeting. Start a Patient Organization. Other Ways to Partner. About the Corporate Council. Council Code of Conduct. Education & Research Programs. Natural Histories Patient Registry. Resources for Medical Professionals. Resources for your Patients. Join the Rare Action Network. Characteristic fac...
Dev. of inhibitors of galactosidase β and the glucuronidase β
http://www.fondation-sanfilippo.org/index.php/en/sanfilippo-disease/supported-projects/dev-of-inhibitors-of-galactosidase--and-the-glucuronidase-
Conception of chemical chaperones. Lysosomal enhancement as a therapeutic strategy for MPS. Dev of inhibitors of galactosidase β and the glucuronidase β. Gene Therapy for MPS IIIA and B. Prévention de l'accumulation intracellulaire de fragments de sulfate d'héparane. Call for tender for Swiss and foreign researchers. Foundation Galas and Congress. Links and Documents to download. Noé and Noa Book. Internet website of associations or foundations. Jump to Main Navigation and Login.
An overview of the current situation of research
http://www.fondation-sanfilippo.org/index.php/en/sanfilippo-disease/overview
Conception of chemical chaperones. Lysosomal enhancement as a therapeutic strategy for MPS. Dev of inhibitors of galactosidase β and the glucuronidase β. Gene Therapy for MPS IIIA and B. Prévention de l'accumulation intracellulaire de fragments de sulfate d'héparane. Call for tender for Swiss and foreign researchers. Foundation Galas and Congress. Links and Documents to download. Noé and Noa Book. Internet website of associations or foundations. Jump to Main Navigation and Login. Multidisciplinary approa...
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eurordi-bat's blog - sprl. €urordi BAT - Skyrock.com
Son site web : http:/ eurordi.free.fr. 06/05/2007 at 9:30 AM. 19/05/2007 at 2:01 PM. Son site officiel* Ce site a pour but. Subscribe to my blog! 8594; Dépannage à tout moment et toute heure. Don't forget that insults, racism, etc. are forbidden by Skyrock's 'General Terms of Use' and that you can be identified by your IP address (66.160.134.2) if someone makes a complaint. Please enter the sequence of characters in the field below. Posted on Sunday, 06 May 2007 at 9:41 AM. Coordonnée de ur o rdi BAT.
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EURORDIS - The Voice of Rare Disease Patients in Europe
The Voice of Rare Disease. What is a rare disease? Find information or help. A public health priority. EU Rare Disease Policy. National Rare Disease Policy. Orphan Drugs and Treatments. What is an orphan drug? Improve the safety of your medicines. Access to orphan drugs. EURORDIS Round Table of Companies (ERTC). List of the latest marketing authorisations and orphan medicinal products designations. Living with a Rare Disease. EURORDIS Community Advisory Board (CAB) Programme. Rare diseases in the arts.
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Welcome to the website of the EuroREACH project | EuroREACH
Is an international collaboration to improve access to and use of healthcare data and to enhance cross-country comparisons of health system performance. The EuroREACH project aims to overcome these challenges by collaborating with and evaluating international and national health information systems and health data projects. EuroREACH ultimately aims to enhance the quality of comparative health systems analysis and performance measurement. The Health Data Navigator. May, 16 -17 2013. January, 21-22nd 2013.
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