The 13th meeting of the General Assembly of the Board of Trustees of the Immunodeficiency Patients Support Association (Registered No. 45305) was held at 10:30 AM on Tuesday, May 9, 2023, at the following address: Tehran, end of Keshavarz Blvd., Dr. Gharib Street, Children’s Medical Center, Building No. 3, 4th Floor (Immunology, Asthma, and Allergy Research Center).
Participants included Dr. Mostafa Moein, Dr. Masoud Mohebi, Dr. Mohammadreza Fazlollahi, Dr. Abolfazl Golestani, Dr. Bahman Shah Mohammadi, Dr. Zahra Pourpak, Dr. Maryam Nourizadeh, and Ms. Marziyeh Salek.
Agenda:
- CEO’s report
- Treasurer’s report
- Appointment of main and alternate auditors
CEO Report by Ms. Salek:
Key activities of the association in 2022:
- Providing financial and non-financial support to patients with immunodeficiency
- Engaging charitable donors
- Following up on patients’ medical issues via the Ministry of Health and the Food and Drug Administration
- Participation in meetings and gatherings
- Education and public awareness
- Ongoing administrative duties
Financial and Non-Financial Support Provided:
- Financial support for diagnostic tests, medication, and hospitalization costs for 130 patients in 300 payment phases, covering 30% to 100% of costs with receipts provided.
- Stem cell transplantation for Sama Safipour successfully performed on March 4, 2023, with 1.3 billion Rials funded by the Association.
- Introduction of three patients to donors for livelihood support
- Coordination with the Iranian Red Crescent Pharmacy in Gorgan to provide Berinert (C1-INH) free of charge to a hereditary angioedema patient
- Coordination with Emad House for temporary housing of transplant patients and their families
Donor Engagement:
- Invitation of donors to the Tehran University of Medical Sciences Health Donor Festival on February 26, 2023
- Face-to-face donor meetings to secure sustainable funding
Medical Advocacy:
- Correspondence with the FDA regarding the shortage of Berinert and the request for import
- Coordination with Avin Darou Company to distribute Berinert nationwide after its import in May 2022
- Efforts to include Berinert in the insurance list via the High Council of Insurance and the Ministry of Health
- Advocacy regarding the shortage of Danazol
- Follow-up on IVIG price changes with the FDA
Participation in Events and Meetings:
- Attending the National Charity Network’s consultation meeting on the draft NGO legislation (Dec 5, 2022)
- Attending the Ministry of Interior’s NGO gathering (Aug 13, 2022)
- Online meeting with HAE international representatives to discuss collaboration and patient care improvements
Education and Public Awareness:
- Website updates
- Formation of patient support groups on “Bale” messaging app due to WhatsApp filtering, with SMS notifications sent to patients
- Formation of a separate supporters group on Bale
- Coordination with Imam Khomeini Hospital Emergency Room for hereditary angioedema crisis care
- 11th educational webinar held on April 29, 2022, focusing on transplant for CGD patients
- 12th webinar held on June 10, 2022, on hereditary angioedema, including training on proper use of Berinert
Administrative and Legal Affairs:
- Follow-up on eNAMAD renewal and online payment availability for the website
- Uploading of member data to the Ministry of Interior’s new platform
- Renewal of operating license through multiple in-person visits in January 2023
- Submission of a formal review letter on the NGO draft law to the National Charity Network
- Correspondence with Dr. Amir Hessam Alizadeh, Head of the Ministry’s Organ Transplant and Special Diseases Office, on patient issues
- In-person meetings with Special Diseases Office regarding insurance packages and classification of immunodeficient patients as special/rare cases
- Introduction of 7 clinical immunologists to the Ministry of Health’s Treatment Division as members of the Scientific Committee on Immunodeficiency
- Collection of Zakat al-Fitr donations during Eid al-Fitr
- Website updates and creation of digital patient records for hereditary angioedema patients
Treasurer’s Report:
Dr. Maryam Nourizadeh presented the 2022 financial report. A total of 689,872,520 Rials was donated to the Association by benefactors, and 681,611,439 Rials were paid directly to patients. The remaining funds were carried over into 2023.
Auditor Appointment:
Following the agenda, a vote was held to appoint auditors. Dr. Abolfazl Golestani was elected as the primary auditor, and Dr. Bahman Shah Mohammadi as the alternate auditor.
Final Resolutions:
- Each board member was asked to introduce potential benefactors for an upcoming introduction event at the Children’s Medical Center to encourage project-based or long-term support.
- Continued follow-up on insurance coverage for Berinert.
The meeting concluded at 12:00 PM.
