PatientPartner is a 3-year EU FP7 (Seventh Framework Programme) project investigating, enforcing and advising on the role of patient organisations in clinical trials. Its main goals are to make inventories of the needs and expectations of involved stakeholders; to realise an European Network of Patients partnering in Clinical Research (ENPCR) to support the projects goals with their advice and to create a European network for interaction with the other stakeholders in the clinical trial field; and to create European, patient-centred guiding tools and recommendations on how to create a successful partnership in the clinical trials context.
The project’s final workshop will be held on 7 – 8 December 2010 at Management Centre Europe, Brussels. Participation in the workshop is free and open to all clinical research stakeholders (patient organisations, academia, pharmaceutical industry, regulators). Travel and accommodation grants are available for patient organisations representatives. Please click here for the workshop webpage where you will find the programme, registration details and practical information.
ICRDOD announces the publication of the next of its reviews, now on the actual situation and tendencies in the rare diseases field in Bulgaria. It contains 5 main chapters: methodology and governance of the Bulgarian National plan for rare diseases (2009 – 2013); definition, codification and inventorying of rare diseases; research on rare diseases; centres of expertise, reference networks and access to orphan drugs; patient empowerment. Our analysis is based on three main documents – EU Council recommendation on action in the field of rare diseases, EUROPLAN recommendations and the Bulgarian National plan for rare diseases. The comments and suggestions, which came from the participants of the EUROPLAN Bulgarian National Conference for Rare Diseases, have been had in mind when completing the explored indicators. You can read the review at the Registries & Statistics section.
We would like to inform you that the Second Annual Conference on Commercialisation & Market Access Strategies for Orphan & Ultra-Orphan Drugs will take place on 17 February 2011 in Barcelona, Spain. Focusing on orphan and ultra-orphan drugs, this event will provide a fresh perspective on one of the industry’s hottest areas for market & patient access. Communicating value and cost-effectiveness with regulators, payers, HTA bodies and other key stakeholders, in such niche markets, requires innovation and a clearly defined process to ensure the message is achieved. The event will be focused purely on orphan therapies and will guarantee all participants access to today’s most relevant case studies and views which directly affect their future business plans and can assist them to maximise market and patient access. Organiser is NextLevel Pharma. For more detailed information, please visit the official website of the event.
Information Centre for Rare Diseases and Orphan Drugs (ICRDOD) is pleased to present the book “On Yesterday, Today and Tomorrow”. It contains the stories of 9 Bulgarian patients with rare diseases and their families. They describe their fears and hopes, their daily struggle to change the status quo. ICRDOD would like to thank the co-authors Maria Kancheva, Yordanka Petkova, Svetlana Atanasova, Elena Dimova, Desislava Hristakeva, Aneta Feodorova, Albena Dimitrova, Elena Eneva, Tsvetelina Yurukova, and Ina Stoitsova for her wonderful photographs. To read “On Yesterday, Today and Tomorrow”, please click here.
A training workshop for people with rare diseases will be held on 1-7 May 2011 in Veliko Tarnovo, Bulgaria. “I know, I can, I succeed” seminar will be focused on personal development, looking for a job and successful presentation in front of employers. Professional psychologists, including Mr. Laurent Gounelle from France will be lecturers. The event is funded by the European Grundtvig Workshops Programme and all the participants’ expenses will be covered under it. For more information – please click here or contact Ms. Daniela Malakova (daniela_malakova@dir.bg ). To access the application form, please click here.
National alliance of people with rare diseases is organizing a training workshop “Psychological Methods – Way of Self-help to Improve Quality of Life of People with Rare Diseases and Their Families”. Lecturers will be the prominent psychotherapist Ms. Madeleine Algafari and the psychologist Elenko Angelov. Participants will have the opportunity to take valuable advices, to discover the possibilities of the positive thinking and how best to use it. The date and place of the workshop will be announced soon. Participation is free. For registration and further information, please contact Ms. Yordanka Petkova, co-ordinator of NAPRD.
Aneta Feodorova and Svetlana Atanasova from the Bulgarian Cystic Fibrosis Association have been nominated for the Person of the Year Award, Bulgarian Helskinki Committe’s annual award for contribution to the human rights. For years, Aneta and Svetla have been fighting for the right of people with cystic fibrosis to adequate and quality treatment, physical rehabilitation and social integration. Support these brave women by voting for them here!
Issue 1 / November 2010 (click here to read the PDF file, 0.98 MB)