RARE DISEASES AND ORPHAN DRUGS
AIFD collaborates intensively with stakeholders and authorized institutions in the field of rare diseases to ensure that patients in Türkiye have access to effective and safe treatment under appropriate conditions. It is important that solid concrete steps are taken in the field of rare diseases and that all relevant stakeholders work in cooperation to ensure that patients have sustainable access to the treatments they need. One of the important parts of the fight against rare diseases is the establishment of reference studies for the treatment of rare diseases. With this awareness and with the support of its member companies, AIFD is preparing a report with concrete data on the development areas in the treatment processes of rare diseases in Türkiye and in this field how access to innovative medicines can be increased. During the preparation of the report, meetings were held with the relevant public stakeholders and active communication was maintained with the Department of Autism, Mental Special Needs and Rare Diseases. Throughout 2022, we met with our member company representatives who supported the preparation of the report and IQVIA, the company commissioned to prepare the our report, in many different meetings and held detailed discussions about the report. AIFD wishes to contribute to the policies to be implemented in the field of rare diseases with this report, which can be a reference source for all stakeholders.
Activities carried out on February 28 Rare Diseases Day
- Informative content was prepared and shared on social media.
- A press release was prepared to emphasize the recent developments and AIFD's perspective on the fight against Rare Diseases.
- A podcast dedicated to Rare Diseases was recorded, moderated by Deniz Atalay, President of the PKU Family Association and Founding Member of the Rare Diseases Network, with the participation of Prof. Dr. Fatih Süheyl Ezgü, faculty member of Gazi University Faculty of Medicine, Departments of Pediatric Metabolism and Pediatric Genetics, as guest speaker.
- AIFD participated in the Rare Diseases Awareness Day Symposium organized by the General Directorate of Health Services.
Rare Diseases Health Strategy Document and Action Plan
An important milestone was the publication of the Rare Diseases Health Strategy Document and Action Plan, which is the first official document in this field in Türkiye, prepared by the Ministry of Health General Directorate of Health Services. As a result of our effective communication with the Department, the draft report was sent to AIFD in June 2022 for comments. AIFD comments, prepared from input from member companies were in a large extent reflected in the in the final version published in November 2022.
Our ability to substantially contribute was considered a very positive Development as the Rare Diseases Health Strategy and Action Plan was published as a roadmap for the years 2023-2027 in the field of Rare Diseases.
As an important step, a workshop is planned to be held with the participation of relevant stakeholders on the realization of the targets included in the Rare Diseases Health Strategy Document and Action Plan.
Participation to Events on Rare Diseases
- On May 28, 2022, AIFD participated in the Metabolic Diseases and Nutrition Congress held in Antakya and a presentation was made by our Health Science Policy Director Nihan Burul Bozkurt in the session on Current Problems and Solution Suggestions in Inherited Metabolic Diseases.
- On 22 December 2022, AIFD Health Policy Manager Zülal İlter Paltaoğlu participated in the Symposium on Centers of Excellence for the Future of Rare Diseases organized by Ankara University.
Meetings With Institutions
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DATE
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INSTITUTION
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CONTACT PERSONS
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MEETING SUMMARY
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08.06.2022
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General Directorate of Health Services, (SHGM)
Department of Autism, Mental Special Needs and Rare
Diseases
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Prof.Dr. Onur Burak Dursun
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Evaluations were made within the scope of SHGM Rare
Diseases Strategic Document and AIFD&IQVIA Rare
Diseases Report.
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15.12.2022
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General Directorate of Health Services, (SHGM)
Department of Autism, Mental Special Needs and Rare
Diseases
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Prof. Dr. Onur Burak Dursun
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The workshop to be organised in the scope of of the SHGM
Rare Diseases Health Strategy Document and Action Plan and
the AIFD&IQVIA Rare Diseases Report is discussed.
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