Final Approval of the Strategic Plan of IPAA and Emphasis on Its Implementation
The second meeting of the Board of Trustees of the Immunodeficiency Patients Advocacy Association (IPAA) in the year 2020 was held at the Immunology, Asthma, and Allergy Research Center.
This meeting took place on Tuesday, July 6, 2020, in Dr. Farhudi Hall of the Immunology, Asthma, and Allergy Research Center with the presence of Dr. Mostafa Moein (Chairman of the Board of Trustees), Dr. Masoud Mohahedi, Dr. Abdolrahman Rostamian, Dr. Zahra Pourpak, Dr. Mohammad Reza Fazlollahi, Dr. Abolfazl Golestani, Dr. Bahman Shah Mohammadi, Dr. Maryam Nourizadeh, and Ms. Marzieh Salek.
At the beginning of the session, Ms. Marzieh Salek, Managing Director of the association, presented a report on the activities of the association in 2019. She also discussed the actions taken regarding the development of the strategic plan, creation of electronic medical records for patients, the launch of the WhatsApp patient support channel, coordination with the Rare Diseases Foundation for receiving and distributing free hygiene packages to patients, and emphasized the need to hold an extraordinary general assembly with the Ministry of Interior to elect a new board of directors as the current term had ended.
Then, Dr. Maryam Nourizadeh, Treasurer of the association, presented the financial statement for the year 2019. Following this, the members exchanged views and presented suggestions related to the discussed topics.
Dr. Moein emphasized the importance of follow-up on previous meeting decisions and their outcomes. He stated that the strategic plan must be considered the guiding light for the association, and we should move forward purposefully within its framework. He added that necessary adjustments for the COVID-19 pandemic and the post-COVID era must be considered and implemented. He also stressed the importance of building relationships with other NGOs and proposed that a social worker be invited to voluntarily collaborate with the association.
Dr. Mohahedi, while appreciating the existing efforts—especially the development of electronic medical records for patients, which helps support them with dignity—stressed the continuation of current activities.
Dr. Golestani emphasized the need to distinguish between the decisions of the Board of Trustees and the Board of Directors and stated that reports on the implementation of Board of Trustees resolutions should be provided. He suggested appointing a financial manager to supervise the accounting affairs of the association and highlighted the importance of reviewing patient support criteria and aligning the association’s objectives with the 2020 strategic plan.
Dr. Pourpak highlighted the necessity of expanding connections with other charitable organizations and activating the association’s Instagram account.
Dr. Rostamian explained the potential avenues for attracting financial resources, including joining international NGOs and strengthening connections with local ones. He also emphasized the need for a social worker and introduced a candidate for the role. He recommended inviting parents of patients to participate in meetings of the Board of Trustees and the Board of Directors and to hold joint sessions with families.
