On 22-23 February 2017 will be organized the 2nd Multi-Stakeholder Symposium on Improving Patient Access to Rare Disease Therapies in Brussels, Belgium. EURORDIS and partners will bring together academics, clinicians, policy makers, investors and industry representatives to provide a platform for dialogue. All stakeholders will have the opportunity to express their views and observations in order to reach sustainable and durable solutions to improve patient access to rare disease therapies across Europe. For more information please follow the site of the symposium.
orphan drugs
The 3rd conference of the International Rare Diseases Research Consortium (IRDiRC) will be held in Paris, France on the 8th and 9th of February 2017. Since the first conference in 2011, considerable advances have been made in rare diseases research globally. All stakeholders – investigators, policy makers, young researchers and industry – are invited to participate. For more information please follow this link.
Sorry, this entry is only available in Bulgarian.
Тhe preparations for the biggest annual event in rare disease field in Bulgaria has already begun. On 09-10 September in Trimontium Hotel Plovdiv will be held the Seventh National Conference on rare diseases and orphan drugs. Major topic for discussions and presentations this year will be personalized approach and innovations in the field.
Everybody willing to participate with a presentation should send their abstracts and posters before 15 August 2016. The deadline for early registration is 15 July 2016 and the last date to sign in for the conference is 1 September.
The Seventh Conference aims to upgrade the discussions from the recent years by providing some up-to-date information on topics like expert centers and reference networks, registries and epidemiological survey, health technology assessment for rare diseases and personalized care for rare disease patients.
You can find more information about the event here.
On 26-30 September 2016 – Rome, Italy, will be held two important events: 4th International Summer School on Rare Disease and Orphan Drug Registries (26-28.09) and RD-Connect BYOD Workshop to Link Rare Disease Registries (29-30.09). Both events are open to health professionals, researchers, medical specialists, medical students, registries curators, database managers and representatives of patient associations, who are involved in or intend to establish a rare disease patient registry.
All information will be available soon here.
On 15.-16.9.2016 – Helsinki, Finland, will be held a seminar about Rare Musculoskeletal Disease – on the edge. The main objective of the seminar is to consider rehabilitation problems, pain, side effects and the cornerstones of treatment related to rare musculoskeletal diseases. The seminar will be of great interest for the target group – physicians, physiotherapists, occupational therapists and other health care professionals.
More information can be found here.
Registration can be made by this link.
The 11th international conference on rare diseases & orphan drugs will be held in Cape Town, South Africa on October 19-22, 2016. The purpose of this conference is to provide a global forum for all stakeholders within the Rare Diseases field, both locally and abroad, to participate in open discussion, enhance models of best practice and share specialist knowledge around rare diseases and orphan drugs. ICORD 2016 will be organised together with Rare Diseases South Africa (RDSA) and Rare Disease International (RDI). Everyone with an interest in rare diseases is welcome to attend and contribute to the annual meeting.
For more information, please visit the conference website.
On April 20- 22 in Washington – the US, was held the World orphan drug congress 2016. in which Prof. Dr. Rumen Stefanov, MDq PhD chairman of Bulgarian Association for Promotion of Education and Science, took part as a speaker.
The World congress for orphan drugs is the largest global event in the field of orphan drugs and rare diseases. The event is conceptualized to provide a platform for pharma and biotech to come together and discuss ways to expedite orphan drug access to rare disease patients. The purpose – access for patients with rare diseases to orphan drugs and treatment. Through lectures, interactive discussions and seminars, this event has the task to deal with the most important challenges facing orphan drugs and the industry dedicated to rare diseases.
The lectures held at the conference affect fundamental topics such as:
– Discovery, optimization and manufacturing of the medicines for rare diseases;
– Patients’ rights and working with patients who participate in the testing of drugs for rare diseases;
– Providing information and minimizing the risk for the patients in the ongoing treatment.
More information about the event can be found here.
The association for research on the effectiveness of health care – Centro Cochrane Italiano, will organize the two-day course for health care guidelines developers on diagnosis of rare diseases. The present course is a part of the capacity building activities of the project RARE-Bestpractices, funded by the European Union’s Seventh Framework Programme. The course will provide participants with the opportunity to acquire skills necessary to produce health care guidelines on diagnosis of rare diseases.
The link to the course programme and the application form is: click here
On April 11, 2016 in the Medical center “RareDis” was held an official meeting with Professor, Dr. Aspazija Sofijanova – director of the university pediatric clinic in Macedonia.
The discussion began by familiarization with of the activity of the Bulgarian association for promotion of education and science, Information centre for rare diseases and orphan drugs, the Centre for health technology assessment and analysis and Medical center “RareDis.” The extensive presentation described the EU criteria to tackle rare diseases, the extremely important development of the European reference networks and the specialized health care facilities for patients with rare diseases. A discussion was held with a medical specialist from the medical center “RareDis” with topics on physiotherapy and rehabilitation for patients with rare diseases.
The discussion gave a good start of cooperation in the field of rare diseases with Macedonia.