The Board of Directors meeting of the Association for Supporting Immunodeficiency Patients was held on Monday, August 17, 2020, with the attendance of Dr. Mostafa Moein, Chairman of the Board; Marzieh Salak, CEO of the Association; Dr. Masoud Mohaedi; Dr. Zahra Pourpak; Dr. Mohammad Reza Fazel Elahi; Dr. Abolfazl Golestani; and Dr. Maryam Nourizadeh.
At the beginning of the meeting, Marzieh Salak reviewed the minutes of the previous meeting, referred to the decisions made and the results of their follow-ups, and presented a report on the Association’s activities in August.
She stated that, according to the Ministry of Interior’s directive banning the holding of general assemblies until the end of September due to the COVID-19 pandemic, the General Assembly for electing the new Board of Directors and amending the statute has been postponed until after October.
The CEO also reported on the immunodeficient patients’ channel on the messaging app WhatsApp, noting that currently about 50 patients are members of this channel. So far, approximately 300 posts related to the introduction of different immunodeficiency diseases and preventive methods against COVID-19 have been shared, receiving very positive feedback from the patients.
She further reported on actions taken regarding the request for membership in the National Charity Network, correspondence with the Food and Drug Administration about the shortage of IVIG medication, planning the allocation of the rare patients’ budget for immunodeficiency patients, recruiting a social worker, visiting the Tax Affairs Department and the status of tax payments for 2018.
The members then discussed the Association’s short-term plan in line with the strategic program and emphasized the necessity of employing a social worker to enhance emotional relationships and empathy with patients, as well as to educate patients, organize patient assistance, and develop guidelines for aid with cooperation from the social worker.
It was resolved to follow up on the following matters:
- Developing a framework and principles for relations with charities in Tehran and other cities
- Securing sustainable financial resources for the Association’s ongoing operations
- Allocating an independent office space for the Association
- Recruiting cooperation from allergy and clinical immunology physicians
Additionally, the establishment of a dedicated virtual channel for “Hereditary Angioedema Patients” was emphasized during this session. The meeting concluded with scheduling regular Board meetings.
