The 19th meeting of the Board of Directors was held from 10:00 to 11:30 AM with the presence of Dr. Moein, Dr. Mohebi, Dr. Fazlollahi, Dr. Golestani, Dr. Pourpak, Dr. Nourizadeh, and Ms. Salek at the meeting hall of the Immunology, Asthma, and Allergy Research Center.
At the beginning, Ms. Salek presented a report on the Association’s activities over the past three months.
Summary of Activities:
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- Providing medical aid to patients with primary immunodeficiency, including coverage for medication, lab tests, hospitalization, and paraclinical treatments.
- Introducing three immunodeficient patients to donors for livelihood support.
- Referring two patients in need of counseling to a psychologist and psychiatrist, with costs covered by the Association.
- Sending antibody test results (post two doses of COVID-19 vaccine) to patients via WhatsApp.
- Following up on license renewal procedures through the Registry Office.
- Coordinating free influenza vaccinations for patients at the Children’s Medical Center.
- Following up on third-dose COVID-19 vaccinations via the Ministry of Health and the Children’s Medical Center.
- Holding a meeting with DorsaDarou Pharmaceutical Company to continue supporting CGD patients with free Gamma Interferon medication.
- Following up with Avin Darou Company to expedite the import of Berinert.
- Collaborating with other charities, including referring a patient from Zahedan to Katij Charity for living support, and attending the Zeinab (SA) Foundation event on December 10, 2021.
- Organizing three educational webinars for patients and their families:
- 6th webinar on prenatal diagnosis, presented by Dr. Alizadeh (October 28, 2021)
- 7th webinar on advanced therapies for immunodeficiency, presented by Dr. Karder (November 25, 2021)
- 8th webinar on genetic counseling for immunodeficiency, presented by Dr. Habibi (December 9, 2021)
- Following up on the stem cell transplant process for Sama Safipour.
Unfortunately, the initial foreign donor from Germany withdrew at the last moment, requiring a new search. Should another foreign donor be found, all funds collected will be allocated to Sama. If a local donor is found instead, the surplus will be used for other children needing domestic stem cell transplants.
Board Discussion:
Members discussed the overall approach to supporting patients in need of stem cell transplantation. Given the Association’s current financial constraints and the high cost of transplants, the majority agreed that the Association cannot offer financial assistance for transplants at this time. Patients will be referred to other charitable organizations. However, in the future, when resources allow, the Association plans to resume such support.
Approved Guidelines for Supporting Transplant Candidates:
As some patients with primary immunodeficiency require stem cell transplantation as a definitive treatment, and transplantation is considered a critical part of their care, the Association recognizes the importance of playing a role in this process. According to its bylaws, the Association is obligated to support all aspects of treatment, including stem cell transplants.
Although current financial limitations prevent full support for all transplant candidates, the Association hopes to someday extend coverage to all eligible patients.
Nonetheless, the Association remains committed to supporting transplant patients and is working to raise public awareness and encourage donor registration in the national bone marrow donor registry.
Efforts will continue to seek financial support through fundraising, public campaigns, and sharing patient needs on social media platforms, particularly to help with the costs of expensive medications and diagnostic services.
