The 12th Annual ICORD Conference and the 6th China Rare Disease Summit was held in Beijing, China, on September 7~10, 2017, which is organized by the International Conference on Rare Disease and Orphan Drugs (ICORD), Chinese Organization for Rare Disorders (CORD) and Peking Union Medical College Hospital (PUMCH).
A delegation from Rare Diseases Foundation of Iran, accompanied by Dr. Ali Davoudian, participated at the event in order to meet other patient societies and organizations’ leaders, and also to visit pharmaceutical companies and medical equipment factories.
This conference provided an important platform for information exchange and communication for rare diseases around the world with the aim to facilitate communication and collaboration via knowledge sharing to foster innovation for rare disease research and development as well as to improve the level of health and well-being for rare disease patients worldwide.
Attendees from China and global academic and research institutions, governments, hospitals, pharmaceutical industries, regulatory agencies, healthcare associations, and patient groups were invited.
Speakers at the inauguration ceremony, while referring to ICORD previous resolutions, said:” It’s time for patients to have easy access to diagnosis and treatment and also for real collaboration in the field of scientific research around the world.”
At the workshops held on the first day, the following topics were discussed:
Chinese Rare Diseases registration system and importance of disease registration in basic clinical research, development of therapies, caring of the patients and decisions of the authorities.
Problems and opportunities to access orphan drugs in China and new markets
Policy development to advance research in the field of Rare Diseases and Orphan Drugs
Cardiovascular and pulmonary diseases, and Rare Disease patients’ blood problems
On the sidelines of the conference, Dr. Ali Davoudian met his Chinese counterpart. Besides, the Iranian delegation visited Sino Vision, the Medical Equipment Company.
The formation of the ICORD Society was a process where many different stakeholders met and discussed mission and aims of ICORD during 2006 and 2007.
The mission of ICORD is to improve the welfare of patients with rare diseases and their families world-wide through better knowledge, research, care, information, education and awareness.
Wish the achievements of these meetings around the world to remove the pharmaceutical concerns of Rare Diseases patients.
