WHAT'S GOING ON?
There are1000 universities, 4,7 mln students, 256k professors in Russia and everyone does research activity and works in laboratory. There are 35 medical universities and every university has a medical department. But how do you know what’s going on there, if there is no one database of laboratories, experiments and studies in Russia.
If you try to get info about it, it is likely that your inquiry will be denied. And it happens because of the fact that the results of tests and experiments often use in someone else’s research and dissertations.
Russian young scientists often reinvent the bicycle over and over again, walking a long way, exploring what is already known. We are sure many studies have been made before, but have not been published due to various reasons.
Patient perspective: Is the promise to involve patients being fulfilled?j-loop
Patient engagement is considered highly relevant in health policy and practice. What about research? The presentation given at the 6th symposium of the Swiss Clinical Trial Organisation in St. Gallen addresses benefits and restraints of patient and public involvement. Areas for future activities in Switzerland are also briefly discussed.
WHAT'S GOING ON?
There are1000 universities, 4,7 mln students, 256k professors in Russia and everyone does research activity and works in laboratory. There are 35 medical universities and every university has a medical department. But how do you know what’s going on there, if there is no one database of laboratories, experiments and studies in Russia.
If you try to get info about it, it is likely that your inquiry will be denied. And it happens because of the fact that the results of tests and experiments often use in someone else’s research and dissertations.
Russian young scientists often reinvent the bicycle over and over again, walking a long way, exploring what is already known. We are sure many studies have been made before, but have not been published due to various reasons.
Patient perspective: Is the promise to involve patients being fulfilled?j-loop
Patient engagement is considered highly relevant in health policy and practice. What about research? The presentation given at the 6th symposium of the Swiss Clinical Trial Organisation in St. Gallen addresses benefits and restraints of patient and public involvement. Areas for future activities in Switzerland are also briefly discussed.
Andrew Lindsay gave a presentation as part of the 2014 Careers After Biological Sciences at the University of Leicester. Having graduated from the University in 2002, with a degree in Medical Biochemistry, Andy went on to study Medicine at Newcastle. He is currently a Specialist Registrar in Emergency Medicine in London. His talk included anecdotes from the various roles he has carried out since qualifying as a doctor, as well as offering advice for anyone interested in becoming a medic.
Andrew Lindsay gave a presentation as part of the 2014 Careers After Biological Sciences at the University of Leicester. Having graduated from the University in 2002, with a degree in Medical Biochemistry, Andy went on to study Medicine at Newcastle. He is currently a Specialist Registrar in Emergency Medicine in London. His talk included anecdotes from the various roles he has carried out since qualifying as a doctor, as well as offering advice for anyone interested in becoming a medic.
Workshop 7 - Brainstorming & Policy Development session: Prevention
"Folic acid prevents neural tubes defect"
Mrs Eli Skattebu, Norwegian Association for Spina Bifida and Hydrocephalus (RHF)"
Kim Hannisdal, BayerAB, Sweden
Article by Dennis Cagan
What to ask a prospective board member, And . . . what you are most likely to be asked by them. Keep in mind that qualifications and suitability are two very different considerations.
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.
EuroBioForum 2013 - Day 1 | Karin EffertzEuroBioForum
EuroBioForum 2013 2nd Annual Conference
27-28 May 2013 - Hilton Munich City, Munich, Germany
http://www.eurobioforum.eu/2013
=======================================
# NATIONAL PERSPECTIVES #
Germany:
Personalized Medicine at the German Federal Ministry of Education and Research (BMBF)
Karin Effertz
Scientific Officer at Federal Ministry for Education and Research
=======================================
http://www.eurobioforum.eu
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
Webinar: EUPATI Update to participants of the EUPATI Focus Groups - 4 Nov 2013EUPATI
Webinar of the European Patients' Academy on Therapeutic Innovation (EUPATI) held on 4 Nov 2013 to update participants of its focus groups about project progress, results of the qualitative research, and how the recommendations translate into content production and dissemination activities of the project.
Partnering with Patients: Designing, Participating in and Reporting Health Ou...patvocates
Partnering with Patients: Designing, Participating in and Reporting Health Outcomes - presented by Jan Geissler at ISPOR 19th ANNUAL CONGRESS in Dublin on 6 Nov 2013
EUPATI’s framework on Informing the “health-interested” public about medicine...Nowgen
"EUPATI's framework on Informing the “health-interested” public objectively and comprehensively about medicines R&D", presented by Jan Geissler at the EUPATI 2014 Workshop in Warsaw
The benefits of patient involvement in research and development (RE:ACT Congr...jangeissler
Presentation of Jan Geissler, Director EUPATI and Co-Founder CML Advocates Network, about the benefits of involving patients in research and development, and about EUPATI. Held at RE:ACT Conress 2016 on Research of Rare and Orphan Diseases, organized by the Blackswan Foundation on 12 March 2016 in Barcelona, Spain
Patient involvement in clinical research and long term conditions -what can b...Nowgen
"Patient involvement in clinical research and long term conditions -what can be achieved by working in partnership", presented by Dr. J. Paul Schofield, ABPI, at EUPATI-UK Network Conference on 6 March 2014 in Leeds, UK
Education of patients (advocates) on R&D: European Patients’ Academy EUPATI...jangeissler
"Education of patients (advocates) on R&D: European Patients’ Academy EUPATI", presented by Jan Geissler at the Careum Congress on 18 March 2014 in Basel
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).
Aysun Karatas MedicReS World Congress 2015 MedicReS
A Non-Profit Sponsor Organisation for Investigator Initiated Oncologic Trials in Germany and Europe Presentation to MedicReS 5th World Congress on October 19,25,2015 in New York by Dr. Aysun Karatas
Workshop 5 - Brainstorming & Policy Development session: Social Aspects
"Feedback from the 15 National Conferences on social aspects"
Britta Berglund, Ehlers Danlos, Sweden
Similar to Session 2 graf_von_der_schulenburg (20)
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
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
Generell soll das Aktionsbündnis Beiträge zur Umsetzung der Ratsempfehlung liefern. Dabei stehen Beiträge zur Erstellung und zum Monitoring eines Nationalen Aktionsplans für Seltene Erkrankungen sowie zur Umsetzung der Forderung nach nationalen Referenzzentren im Vordergrund. Weiterhin soll durch Bündelung der bisherigen Initiativen einzelner Akteure die Transparenz erhöht, Doppelarbeiten vermieden und die Wirkung dieser Initiativen verbessert werden. Es sollen auch neue Maßnahmen (z. B. Modellprojekte) zur Verbesserung der gesundheitlichen Situation von Menschen mit Seltenen Erkrankungen zwischen Bund, Ländern und den weiteren Akteuren des Gesundheitswesens koordiniert werden. Die Förderung dieser weiterführenden Aktionen erfolgt durch die Akteure des NAMSE. Hier wären auch Public-Private Partnerships denkbar. Säulen: ACHSE, BMBF, BMG
Die Steuerungsgruppe ist das maßgebliche Entscheidungsgremium des Kooperationsverbundes und für den Nationalen Aktionsplan Seltene Erkrankungen. Sie setzt sich zusammen aus Vertretern der wesentlichen Akteuren aller relevanter Bereiche. Die Steuerungsgruppe legt die grundsätzlichen Ziele fest, die in den Arbeitsgruppen bearbeitet werden. Sie verabschiedet Handlungs- und Umsetzungsempfehlungen für den Nationalen Aktionsplan Seltene Erkrankungen. Die Sitzungen der Steuerungsgruppe werden vom BMG geleitet Steuerungsgruppe setzt sich aus Bündnispartnern zusammen.
Die Arbeitsgruppen leisten die fachlich-inhaltlichen Ausarbeitungen zu den Themen. Die Mitglieder der Arbeitsgruppen werden von der Steuerungsgruppe benannt. Die Sitzungen der Arbeitsgruppen werden geleitet von einem Sprecher, der von den Arbeitsgruppenmitgliedern gewählt wird. Je nach Bedarf werden externe Experten hinzugeladen. Jede Arbeitsgruppe wird durch die zuständigen Fachreferate des BMG und BMBF "betreut". Zur Sicherung der Arbeitsfähigkeit der AG soll eine bestimmte Anzahl von Mitgliedern nicht überschritten werden. Vorgeschlagen werden maximal 12 Teilnehmer je Arbeitsgruppe. Bei speziellen Fragestellungen können ggf. gezielt weitere Experten temporär in die AG eingebunden und Unterarbeitsgruppen eingerichtet werden. Die Mitglieder der AG können personenidentisch zur Mitgliedschaft der Steuerungsgruppe sein. Diese Entscheidung obliegt den vertretenen Akteuren. Die Benennung der AG-Mitglieder erfolgt durch die Steuerungsgruppe.
Unterstützt wird das NAMSE durch eine externe Geschäftsstelle. Diese unterstützt die Steuerungsgruppe des Bündnisses und gewährleistet die Funktionsfähigkeit der Gremien. Geführt wird die Geschäftsstelle von einem Leiter/einer Leiterin und hat folgende Aufgaben: Koordinierung der Arbeit des Aktionsbündnisses, d.h. primärer Ansprechpartner für Steuerungsgruppe und Arbeitsgruppen wie auch BMG, BMBF und Selbsthilfe (Kommunikationszentrale), wissenschaftlich-fachliche und administrativ-organisatorische Unterstützung des Aktionsbündnisses (Steuerungsgruppe, Arbeitsgruppen und BMG, BMBF und Selbsthilfe), Einberufung der Sitzungen Steuerungsgruppe sowie der Arbeitsgruppen, Presse- und Öffentlichkeitsarbeit in Abstimmung mit der Steuerungsgruppe, Vorbereitung von (Modell-)Projekten und weiteren Aktionen.