Rare Diseases Foundation of Iran at Eurordis Membership Meeting 2017
Dr. Ali Davoudian, the Managing Director of Rare Diseases Foundation of Iran, attended Eurordis Membership Meeting 2017 in Budapest to bring the authorities the voice of patients with rare diseases.
The meeting held on May 19th & 20th coincides with Ordibehesht 29th & 30th. Rare Diseases Foundation of Iran was invited to participate at this event, so Dr. Ali Davoudian took part in this meeting.
Before the Congress, there was a closed meeting only for members from different countries focused on supporting Rare Diseases Patients at national unions.
At the beginning, Mr. Yann Le Cam, the Chief Executive Officer of Rare Disease Europe while welcoming the guest, thanked Dr. Davoudian for his participation. He added:” Although it was time for the election in Iran, Dr. Davoudian attended the meeting because of the importance of the Rare Patients, he cast his vote in Iran Embassy in Hungary.”
Then he said:” Activities against Rare Diseases are in progress by Dr. Davoudian managing and efforts and the resulting reports are pleasant.”
At the meeting, patient organizations have come together in therapeutic groupings and represent their best interests in European Patients Advocacy groups. Patient organizations have engaged in partnerships with a multitude of stakeholders to make their voice heard.
Mr. Tekel Andersen, president of Eurordis, said:” Since communicating with patients and their families and also accompany them in society, government and public is an important issue, advocates have to form a big family to help patients overcome the obstacles.”
He continued his speech by talking about elements of success, weak points, strengths, promoting knowledge and information over rare diseases around the world, sharing information across the world by using servers and information services, raising awareness amongst the general public and policy makers, holding seminars, workshop and summer school.
Andersen reffered to the growth Rare Disease Europe international collaborations as the greatest achievements in the recent years.
In addition, four workshops and a roundtable held on the day after the meeting which the most important one among them was related to forming the European Reference Network (ERN).
Another topic discussed at the meeting was lack of treatment;
For lack of treatment, many RD patients resort to NATC Treatments (Natural, Alternative, Traditional, and Complementary) hoping for a positive impact on their disease. However, in the absence of evidence-based data and clinical trials, these patients risk adverse effects, the decline in health, interactions with other medicines, financial burden. However, in many rare diseases, NATC have a positive impact on patient’s health and quality of life. It is urgent to collect data about NATC, share experience and work towards a strategy to generate research and robust knowledge on NATC.
In the end, Dr. Ali Davoudian, Mr. Yann Le Cam, and Mr. Patrice Regnier talked over their mutual agreements at a closed session including; adding Persian language to Rare Connect and forming a committee for Information Technology.