Workshop 4 - Research
"Presentation of the RD Platform fact finding study
on the trends and determinants of rare disease research"
Virginie Hivert, Orphanet, France
Workshop 3 - Registries
"Outcome of the RD Task Force and EPPOSI Workshop"
on registries, Tsveta Schyns, ENRAH
Eurordis Membership Meeting 2011 Amsterdam
13 – 14 May 2011
Tsveta Schyns
Workshop 4 - Research
"Presentation of the RD Platform fact finding study
on the trends and determinants of rare disease research"
Virginie Hivert, Orphanet, France
Workshop 3 - Registries
"Outcome of the RD Task Force and EPPOSI Workshop"
on registries, Tsveta Schyns, ENRAH
Eurordis Membership Meeting 2011 Amsterdam
13 – 14 May 2011
Tsveta Schyns
Work Package (WP) 12 – PEARL Barriers In search for an inventory and assessme...ExternalEvents
http://www.fao.org/about/meetings/wgs-on-food-safety-management/en/
International challenges regarding the future sharing of sequence data. Presentation from the Technical Meeting on the impact of Whole Genome Sequencing (WGS) on food safety management and GMI-9, 23-25 May 2016, Rome, Italy.
Blockchain can be applied in several use cases such as data management in electronic medical records, healthcare data security, and management of genomics at the point of care. To know more details and information about use cases, you can visit the below websites:
https://dhealth.network/use-cases/
https://dhealth.network/2021/01/11/health-certificates-on-blockchain/
https://dhealth.network/2021/01/07/hemophilia/
https://dhealth.network/2020/12/10/rabies-vaccine-tracking-with-blockchain-in-mali-and-ivory-coast/
https://dhealth.network/2020/12/01/management-of-respiratory-diseases-with-the-centiva-life-app/
Dr. Piotr Iwanowski - 6th Clinical Research ConferenceStarttech Ventures
Ομιλία - Παρουσίαση: Dr. Piotr Iwanowski, National Board Member, Polish Association for Good Clinical Practice (GCPpl) & Associate VP Clinical Research Europe, Wockhardt Bio AG
Τίτλος Παρουσίασης: «The Five Things Changing the Landscape of Clinical Research»
Workshop 6 - Brainstorming & Policy Development session: Training, information and education of MDs
"Training package on RD for medical students"
Bernd Quadder, Deutsche Sarcoidose Vereinigung,
Germany
Workshop 6 - Brainstorming & Policy Development session: Training, information and education of MDs
"Feedback from the 15 National Conferences"
Christel Nourissier, EURORDIS
Workshop 6 - Brainstorming & Policy Development session: Training, information and education of MDs
"Sharing expertise: transfer of experience from patient organizations to doctors and between patient
organisations"
Rainald von Gizycki, Retina Europe,
Germany
"The patient experience in the development and implementation of National Plans for Rare Diseases in France"
Christel Nourissier
EURORDIS General Secretary
& Member of the EU Comittee of Experts on Rare Diseases
EUROPLAN advisor
EuroBioForum 2013 - Day 2 | Frank MolinaEuroBioForum
EuroBioForum 2013 2nd Annual Conference
27-28 May 2013 - Hilton Munich City, Munich, Germany
http://www.eurobioforum.eu/2013
=======================================
# REGIONAL PERSPECTIVES #
EuroBioMed, France:
Private-public collaborations to boost open innovation
Dr Franck Molina
President of EDCA, Chair of diagnosis group of Eurobiomed
Director of Sysdiag
=======================================
http://www.eurobioforum.eu
Ségolème Aymé - Infraestructuras de I + D para impulsar investigación en Enfe...Fundación Ramón Areces
El 29 de octubre de 2014, la Fundación Ramón Areces celebró una nueva conferencia del ciclo de Enfermedades Raras organizado con el Vall d'Hebron Institute of Research de Barcelona. En esta ocasión, Ségolène Aymé, directora emérita de investigación del INSERM, fundadora de Orphanet y presidenta del Grupo Consultivo Temático sobre Enfermedades Raras en la OMS, habló sobre 'Las infraestructuras de I+D necesarias para impulsar la investigación en Enfermedades Raras'. Antes de su intervención, explicó en esta entrevista cómo mejorar las políticas de investigación en patologías poco frecuentes.
Work Package (WP) 12 – PEARL Barriers In search for an inventory and assessme...ExternalEvents
http://www.fao.org/about/meetings/wgs-on-food-safety-management/en/
International challenges regarding the future sharing of sequence data. Presentation from the Technical Meeting on the impact of Whole Genome Sequencing (WGS) on food safety management and GMI-9, 23-25 May 2016, Rome, Italy.
Blockchain can be applied in several use cases such as data management in electronic medical records, healthcare data security, and management of genomics at the point of care. To know more details and information about use cases, you can visit the below websites:
https://dhealth.network/use-cases/
https://dhealth.network/2021/01/11/health-certificates-on-blockchain/
https://dhealth.network/2021/01/07/hemophilia/
https://dhealth.network/2020/12/10/rabies-vaccine-tracking-with-blockchain-in-mali-and-ivory-coast/
https://dhealth.network/2020/12/01/management-of-respiratory-diseases-with-the-centiva-life-app/
Dr. Piotr Iwanowski - 6th Clinical Research ConferenceStarttech Ventures
Ομιλία - Παρουσίαση: Dr. Piotr Iwanowski, National Board Member, Polish Association for Good Clinical Practice (GCPpl) & Associate VP Clinical Research Europe, Wockhardt Bio AG
Τίτλος Παρουσίασης: «The Five Things Changing the Landscape of Clinical Research»
Workshop 6 - Brainstorming & Policy Development session: Training, information and education of MDs
"Training package on RD for medical students"
Bernd Quadder, Deutsche Sarcoidose Vereinigung,
Germany
Workshop 6 - Brainstorming & Policy Development session: Training, information and education of MDs
"Feedback from the 15 National Conferences"
Christel Nourissier, EURORDIS
Workshop 6 - Brainstorming & Policy Development session: Training, information and education of MDs
"Sharing expertise: transfer of experience from patient organizations to doctors and between patient
organisations"
Rainald von Gizycki, Retina Europe,
Germany
"The patient experience in the development and implementation of National Plans for Rare Diseases in France"
Christel Nourissier
EURORDIS General Secretary
& Member of the EU Comittee of Experts on Rare Diseases
EUROPLAN advisor
EuroBioForum 2013 - Day 2 | Frank MolinaEuroBioForum
EuroBioForum 2013 2nd Annual Conference
27-28 May 2013 - Hilton Munich City, Munich, Germany
http://www.eurobioforum.eu/2013
=======================================
# REGIONAL PERSPECTIVES #
EuroBioMed, France:
Private-public collaborations to boost open innovation
Dr Franck Molina
President of EDCA, Chair of diagnosis group of Eurobiomed
Director of Sysdiag
=======================================
http://www.eurobioforum.eu
Ségolème Aymé - Infraestructuras de I + D para impulsar investigación en Enfe...Fundación Ramón Areces
El 29 de octubre de 2014, la Fundación Ramón Areces celebró una nueva conferencia del ciclo de Enfermedades Raras organizado con el Vall d'Hebron Institute of Research de Barcelona. En esta ocasión, Ségolène Aymé, directora emérita de investigación del INSERM, fundadora de Orphanet y presidenta del Grupo Consultivo Temático sobre Enfermedades Raras en la OMS, habló sobre 'Las infraestructuras de I+D necesarias para impulsar la investigación en Enfermedades Raras'. Antes de su intervención, explicó en esta entrevista cómo mejorar las políticas de investigación en patologías poco frecuentes.
EUPATI Status Update at EMA PCWP Meeting, 26 Nov 2015jangeissler
Overview and Status Quo of the European Patients Academy (EUPATI) project, presented by EUPATI Director Jan Geissler at the EMA Patient and Consumer Working Party (PCWP) meeting in London on 26 Nov 2015
European Patients' Academy - Presentation at IMI Patient Focus Meeting on 12 ...EUPATI
European Patients' Academy - Presentation at IMI Patient Focus Meeting on 12 June 2013, presented by Jan Geissler (@jangeissler), Director EUPATI (@EUPATIents) at the IMI's "Patient Focus" meeting, convening patient leaders from across Europe
Workshop 2 - Centres of expertise & Networks of experts
"Presentation of the concept, definitions and
terminology"
Samantha Parker, E-IMD, OrphanEurope
EUPATI 2013 Conference: Vision on Patient involvement in medicines R&D: Here...EUPATI
"Patient involvement in medicines R&D: Here we are, and where we want to be in 2020" by Nicola Bedlington, Executive Director of European Patients' Forum and Coordinator of the EUPATI project, at the EUPATI 2013 Conference on 19 April 2013.
European Cancer Patient Advocacy: Introduction to the community, key stakehol...jangeissler
Overview of the European cancer patient advocacy community, key stakeholder interfaces and key initiatives and projects in evidence-based advocacy and capacity building. Presented by Jan Geissler, Patvocates, at European School of Oncology Masterclass, 23 Feb 2019, Lisbon, Portugal
I will discuss the formation and subsequent growth of IRDiRC into an organization with nearly 40 public and private funder members who have collectively pledged over 1 billion euros for rare disease research. I will also present the goals of IRDiRC, the plan that has been developed to achieve them, and the progress that has been made thus far. Finally, I will explore how additional organizations can take part in this international collaborative effort
European Union Action in the field of Rare Diseases. Antoni Monserrat Moliner. Presentation of the Strategy in Rare Diseases of the National Health System. (Madrid, Ministry of Health and Social Politics, 2009).
EuroBioForum 2013 - Day 1 | Emmanuelle BenzimraEuroBioForum
EuroBioForum 2013 2nd Annual Conference
27-28 May 2013 - Hilton Munich City, Munich, Germany
http://www.eurobioforum.eu/2013
=======================================
# MARKET PERSPECTIVES #
Navigating the Challenges of Personalised Medicine Access in Europe
Emmanuelle Benzimra
General Delegate at EPEMED, The European Personalised Medicine Association
=======================================
http://www.eurobioforum.eu
During the EURORDIS Membership meeting 2016 in Edinburgh, Scotland the RareConnect team presented progress on the platform along with highlighting how rare disease patient groups can take part in the project.
RareConnect has been collecting the dates of different global and national awareness days for different rare diseases in this blog post: http://blog.rareconnect.org/tip-of-the-week/rare-disease-awareness-days/
Many patient groups ask us how to start an awareness day for their individual disease. This presentations discusses best practices in starting an awareness day for your community. Highlights of what works to bring together your community for a disease awareness day.
Watch the entire webinar that this presentation was part of here: http://blog.rareconnect.org/best-practices/rareconnect-webinar-how-to-start-an-awareness-day-for-your-rare-disease/
Tumor Necrosis Factor (TNF) Receptor-Associated Periodic Fever Syndrome (TRAPS), also known as Familial Hibernian Fever (FHF) is a rare, dominantly-inherited autoinflammatory disease that is caused by a mutation in the TNFRSF1A gene. The RareConnect team worked with moderators from the TRAPS community and a TRAPS medical professional to create this 30 question poll on living with the disease in order to understand the experiences of people living with this rare disease. The poll was open on RareConnect.org for 6 months and was sent to all members of the TRAPS community on RareConnect. 66 people completed the poll in English, German, French, Spanish, and Italian. The charts below is the summary data from those participants responses. For more visit: https://www.rareconnect.org/en/community/traps-syndrome/article/living-with-traps-poll
This presentation was given on July 28th during the Pitt Hopkins UK support group meeting in Manchester, UK.
Join the Pitt Hopkins syndrome community here:
https://www.rareconnect.org/en/community/pitt-hopkins-syndrome/understand
After being launched for 1 year, the RareConnect team updates the EuMGa, the European Myasthenia Gravis Federation on progress made in the MG community.
Highlights from Rare Disease Day 2011 which took place on Feb 28. An international awareness day coordinated at the international level by EURORDIS (Rare Diseases Europe)
Workshop 7 - Brainstorming & Policy Development session: Prevention
"EUROCAT Study on Prevention of Congenital Anomalies"
Dr. Domenica Taruscio, ISS Italy
These simplified slides by Dr. Sidra Arshad present an overview of the non-respiratory functions of the respiratory tract.
Learning objectives:
1. Enlist the non-respiratory functions of the respiratory tract
2. Briefly explain how these functions are carried out
3. Discuss the significance of dead space
4. Differentiate between minute ventilation and alveolar ventilation
5. Describe the cough and sneeze reflexes
Study Resources:
1. Chapter 39, Guyton and Hall Textbook of Medical Physiology, 14th edition
2. Chapter 34, Ganong’s Review of Medical Physiology, 26th edition
3. Chapter 17, Human Physiology by Lauralee Sherwood, 9th edition
4. Non-respiratory functions of the lungs https://academic.oup.com/bjaed/article/13/3/98/278874
New Drug Discovery and Development .....NEHA GUPTA
The "New Drug Discovery and Development" process involves the identification, design, testing, and manufacturing of novel pharmaceutical compounds with the aim of introducing new and improved treatments for various medical conditions. This comprehensive endeavor encompasses various stages, including target identification, preclinical studies, clinical trials, regulatory approval, and post-market surveillance. It involves multidisciplinary collaboration among scientists, researchers, clinicians, regulatory experts, and pharmaceutical companies to bring innovative therapies to market and address unmet medical needs.
ARTIFICIAL INTELLIGENCE IN HEALTHCARE.pdfAnujkumaranit
Artificial intelligence (AI) refers to the simulation of human intelligence processes by machines, especially computer systems. It encompasses tasks such as learning, reasoning, problem-solving, perception, and language understanding. AI technologies are revolutionizing various fields, from healthcare to finance, by enabling machines to perform tasks that typically require human intelligence.
Knee anatomy and clinical tests 2024.pdfvimalpl1234
This includes all relevant anatomy and clinical tests compiled from standard textbooks, Campbell,netter etc..It is comprehensive and best suited for orthopaedicians and orthopaedic residents.
Report Back from SGO 2024: What’s the Latest in Cervical Cancer?bkling
Are you curious about what’s new in cervical cancer research or unsure what the findings mean? Join Dr. Emily Ko, a gynecologic oncologist at Penn Medicine, to learn about the latest updates from the Society of Gynecologic Oncology (SGO) 2024 Annual Meeting on Women’s Cancer. Dr. Ko will discuss what the research presented at the conference means for you and answer your questions about the new developments.
micro teaching on communication m.sc nursing.pdfAnurag Sharma
Microteaching is a unique model of practice teaching. It is a viable instrument for the. desired change in the teaching behavior or the behavior potential which, in specified types of real. classroom situations, tends to facilitate the achievement of specified types of objectives.
Recomendações da OMS sobre cuidados maternos e neonatais para uma experiência pós-natal positiva.
Em consonância com os ODS – Objetivos do Desenvolvimento Sustentável e a Estratégia Global para a Saúde das Mulheres, Crianças e Adolescentes, e aplicando uma abordagem baseada nos direitos humanos, os esforços de cuidados pós-natais devem expandir-se para além da cobertura e da simples sobrevivência, de modo a incluir cuidados de qualidade.
Estas diretrizes visam melhorar a qualidade dos cuidados pós-natais essenciais e de rotina prestados às mulheres e aos recém-nascidos, com o objetivo final de melhorar a saúde e o bem-estar materno e neonatal.
Uma “experiência pós-natal positiva” é um resultado importante para todas as mulheres que dão à luz e para os seus recém-nascidos, estabelecendo as bases para a melhoria da saúde e do bem-estar a curto e longo prazo. Uma experiência pós-natal positiva é definida como aquela em que as mulheres, pessoas que gestam, os recém-nascidos, os casais, os pais, os cuidadores e as famílias recebem informação consistente, garantia e apoio de profissionais de saúde motivados; e onde um sistema de saúde flexível e com recursos reconheça as necessidades das mulheres e dos bebês e respeite o seu contexto cultural.
Estas diretrizes consolidadas apresentam algumas recomendações novas e já bem fundamentadas sobre cuidados pós-natais de rotina para mulheres e neonatos que recebem cuidados no pós-parto em unidades de saúde ou na comunidade, independentemente dos recursos disponíveis.
É fornecido um conjunto abrangente de recomendações para cuidados durante o período puerperal, com ênfase nos cuidados essenciais que todas as mulheres e recém-nascidos devem receber, e com a devida atenção à qualidade dos cuidados; isto é, a entrega e a experiência do cuidado recebido. Estas diretrizes atualizam e ampliam as recomendações da OMS de 2014 sobre cuidados pós-natais da mãe e do recém-nascido e complementam as atuais diretrizes da OMS sobre a gestão de complicações pós-natais.
O estabelecimento da amamentação e o manejo das principais intercorrências é contemplada.
Recomendamos muito.
Vamos discutir essas recomendações no nosso curso de pós-graduação em Aleitamento no Instituto Ciclos.
Esta publicação só está disponível em inglês até o momento.
Prof. Marcus Renato de Carvalho
www.agostodourado.com
Flu Vaccine Alert in Bangalore Karnatakaaddon Scans
As flu season approaches, health officials in Bangalore, Karnataka, are urging residents to get their flu vaccinations. The seasonal flu, while common, can lead to severe health complications, particularly for vulnerable populations such as young children, the elderly, and those with underlying health conditions.
Dr. Vidisha Kumari, a leading epidemiologist in Bangalore, emphasizes the importance of getting vaccinated. "The flu vaccine is our best defense against the influenza virus. It not only protects individuals but also helps prevent the spread of the virus in our communities," he says.
This year, the flu season is expected to coincide with a potential increase in other respiratory illnesses. The Karnataka Health Department has launched an awareness campaign highlighting the significance of flu vaccinations. They have set up multiple vaccination centers across Bangalore, making it convenient for residents to receive their shots.
To encourage widespread vaccination, the government is also collaborating with local schools, workplaces, and community centers to facilitate vaccination drives. Special attention is being given to ensuring that the vaccine is accessible to all, including marginalized communities who may have limited access to healthcare.
Residents are reminded that the flu vaccine is safe and effective. Common side effects are mild and may include soreness at the injection site, mild fever, or muscle aches. These side effects are generally short-lived and far less severe than the flu itself.
Healthcare providers are also stressing the importance of continuing COVID-19 precautions. Wearing masks, practicing good hand hygiene, and maintaining social distancing are still crucial, especially in crowded places.
Protect yourself and your loved ones by getting vaccinated. Together, we can help keep Bangalore healthy and safe this flu season. For more information on vaccination centers and schedules, residents can visit the Karnataka Health Department’s official website or follow their social media pages.
Stay informed, stay safe, and get your flu shot today!
263778731218 Abortion Clinic /Pills In Harare ,sisternakatoto
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Ethanol (CH3CH2OH), or beverage alcohol, is a two-carbon alcohol
that is rapidly distributed in the body and brain. Ethanol alters many
neurochemical systems and has rewarding and addictive properties. It
is the oldest recreational drug and likely contributes to more morbidity,
mortality, and public health costs than all illicit drugs combined. The
5th edition of the Diagnostic and Statistical Manual of Mental Disorders
(DSM-5) integrates alcohol abuse and alcohol dependence into a single
disorder called alcohol use disorder (AUD), with mild, moderate,
and severe subclassifications (American Psychiatric Association, 2013).
In the DSM-5, all types of substance abuse and dependence have been
combined into a single substance use disorder (SUD) on a continuum
from mild to severe. A diagnosis of AUD requires that at least two of
the 11 DSM-5 behaviors be present within a 12-month period (mild
AUD: 2–3 criteria; moderate AUD: 4–5 criteria; severe AUD: 6–11 criteria).
The four main behavioral effects of AUD are impaired control over
drinking, negative social consequences, risky use, and altered physiological
effects (tolerance, withdrawal). This chapter presents an overview
of the prevalence and harmful consequences of AUD in the U.S.,
the systemic nature of the disease, neurocircuitry and stages of AUD,
comorbidities, fetal alcohol spectrum disorders, genetic risk factors, and
pharmacotherapies for AUD.
For Better Surat #ℂall #Girl Service ❤85270-49040❤ Surat #ℂall #Girls
Session 2 segolene_ayme
1. State of the Arts of Services in Europe: where are the problems ? 5the European Conference on Rare Diseases 2010 Krakow, Poland, 13 may 2010 [email_address] Paris, France
14. Availability at national level in 2007 of the 22 first OMPs authorised at EU level before 1 January 2006 (source: Eurordis Survey) 20-21 15-19 10-14 5-9 0-5
![State of the Arts of Services in Europe: where are the problems ? 5the European Conference on Rare Diseases 2010 Krakow, Poland, 13 may 2010 [email_address] Paris, France](https://image.slidesharecdn.com/session2segoleneayme-100526062947-phpapp02/85/Session-2-segolene_ayme-1-320.jpg)
![[object Object],[object Object],[object Object],[object Object],Services addressing rarity ,[object Object],[object Object],National policy and social forums Access to innovative therapies Support to patient groups ,[object Object],[object Object],[object Object],[object Object],Funding for network and registries Neonatal screening for additional diseases if relevant Specialised centres for disability due to RD ,[object Object],[object Object],[object Object],Neonatal screening for PKU and hypothyroidism Centres of expertise by disease / group of diseases ,[object Object],[object Object],Networks of laboratories by level / External quality assessment AVAILABILITY OF SERVICES AFFORDABILITY OF SERVICES](data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7)