Ghana Patient Organisation of Primary Immunodeficiencies-GhanaPOPI

28/06/2026

Early detection through screening Saves Lives!

21/05/2026

IPOPI is deeply saddened to learn of the passing of Paweł Górniak, President of the Poland Association for Patients with Primary Immunodeficiencies “Immunoprotect”.

Paweł was a dedicated advocate for people living with primary immunodeficiencies and a valued member of the PID community in Poland and beyond. Through his work with Immunoprotect, he contributed to raising awareness, strengthening patient support, and giving a voice to individuals and families affected by PIDs.

His passing is a great loss to his family, friends, colleagues, and to all those who had the privilege of knowing him or working alongside him. His commitment, kindness, and contribution to the PID community will be remembered with deep respect and gratitude.

On behalf of IPOPI, we extend our heartfelt condolences to Paweł’s family, to Immunoprotect, and to the Polish PID community during this very difficult time.

May his legacy continue to inspire the important work carried forward in support of patients and families.

21/05/2026

Join us for the upcoming IPOPI Hard Talks session focused on the diagnosis of autoimmune pulmonary alveolar proteinosis.

Designed for clinicians, nurses, and patient group leaders interested in PID diagnosis and clinical management, the IPOPI Hard Talks series brings together expert speakers for interactive discussions and lively debate on challenging clinical care topics.

This session will be moderated by Martine Pergent, IPOPI President, and Dr Nizar MAHLAOUI, Chair of IPOPI MAP.

Registration is required to attend. Register now, invite your colleagues and professional networks, and help us make this an engaging and valuable conversation: https://lnkd.in/epqhHDEx

Event supported by Savara Inc.

04/05/2026

Throw Back- Launching of GhanaPOPI🇬🇭

30/04/2026

27/04/2026

Key Features of the Logo and Their Health Implications.

1. Central Symbol (OPI Emblem)
Health Implication:
Shows that primary immunodeficiencies are serious conditions that need early detection, proper care, and continuous management.

2. Supporting Hands
Health Implication:
Represents care and support, highlighting the importance of healthcare workers, families, and the community in helping patients.

3. Circular Design
Health Implication:
Shows a complete healthcare approach from prevention to long-term care and the need for teamwork among all stakeholders.

4. Map of Ghana
Health Implication:
• Reflects national identity
• Shows commitment to improving healthcare in Ghana
• Emphasizes equal access to care across all regions

25/04/2026

Mr. Sylvester shared a deeply emotional and personal account that highlighted both the struggles and strength experienced throughout the child’s illness. He spoke with a mixture of grief and gratitude, reflecting on how the journey, though painful, was filled with love, hope, and cherished memories.

He began by describing the joy that surrounded the child’s birth, emphasizing how the child brought warmth and happiness into the family from the very beginning. However, this joy was soon met with challenges as the child started experiencing serious health complications, including recurrent infections and hospital admissions. He explained how difficult it was for the family to witness such a young child go through frequent medical procedures and prolonged hospital stays.

As the diagnosis of Wiskott-Aldrich Syndrome was made, he expressed how overwhelming it was to come to terms with a rare and complex condition. Despite this, the family remained hopeful and committed to seeking the best possible care. He acknowledged the efforts of healthcare professionals, particularly the support received during admissions at Korle Bu Teaching Hospital, which helped manage the child’s condition and provided some relief during critical moments.

Beyond the medical challenges, the relative highlighted the child’s resilience and joyful spirit. He shared how the child continued to embrace life, enjoying school, friendships, and simple moments of happiness despite the illness. These memories, he noted, remain a source of comfort to the family.

In concluding his account, he spoke about the child’s final days with a sense of peace, rooted in faith and acceptance. Though the loss is deeply felt, he emphasized that the child’s life, though short, was meaningful and impactful. His story served as a powerful reminder of the importance of early diagnosis, continuous care, and emotional support for families dealing with primary immunodeficiencies.

24/04/2026

At the inaugural event, Dr. Richard Bright Danyoh presented the Ghana Primary Immunodeficiency Patient Organisation and its role in improving the lives of people living with Primary Immunodeficiencies in Ghana.

He explained that Primary Immunodeficiencies are conditions that affect the immune system, making individuals more prone to frequent infections. These conditions are often not diagnosed early, which makes awareness and proper care very important.

Dr. Danyoh highlighted that GhanaPOPI is a patient-focused organization that works to raise awareness, support patients, and promote early diagnosis and treatment. A key achievement of the organization is its membership in the International Patient Organisation for Primary Immunodeficiencies, which was approved in October 2025. This gives GhanaPOPI global recognition and access to international support and resources.

Through this partnership, GhanaPOPI can take part in global activities such as World PI Week, organize educational programs, and collaborate with other patient groups around the world.

To conclude, GhanaPOPI aims to improve awareness, support patients and families, and help ensure better diagnosis and care for people living with Primary Immunodeficiencies in Ghana.

23/04/2026

Inaugural Event of GhanaPOPI

Today marks a significant milestone in Ghana’s healthcare advocacy landscape with the successful inauguration of the Ghana Primary Immunodeficiency Patient Organisation (GhanaPOPI), held at the Korle Bu Teaching Hospital.

The event brought together healthcare professionals, patient advocates, caregivers, and stakeholders, all united in the mission to improve awareness, diagnosis, treatment, and support for individuals living with primary immunodeficiencies (PIDs) in Ghana.

A major highlight of the event was the keynote address delivered by Dr. Yemah Mariama Bockarie, a Senior Specialist Paediatrician. Her presentation shed light on the often overlooked burden of PIDs and emphasized the urgent need for early diagnosis and intervention.

She noted that primary immunodeficiency disorders are a large and complex group of over 550 conditions caused by defects in the immune system. These conditions, also known as inborn errors of immunity, leave individuals highly vulnerable to recurrent infections, autoimmune conditions, and other complications.

Importantly, the keynote highlighted the global and regional burden of PIDs:
-Approximately 6 million people worldwide are affected, yet 70–90% remain undiagnosed
-There is an average diagnostic delay of about 2 years
In Africa, an estimated 902,000 individuals may be living with PID, many without proper diagnosis or care.

Dr. Bockarie stressed that delayed diagnosis continues to be a major challenge, often resulting in prolonged suffering and preventable complications. She called for increased awareness among healthcare workers, strengthened diagnostic systems, and improved access to specialized care.

The event also celebrated GhanaPOPI’s affiliation with the International Patient Organisation for Primary Immunodeficiencies, positioning the organization within a global network committed to improving the lives of people with PIDs.

As GhanaPOPI begins its journey, the inauguration serves as a strong call to action highlighting that with awareness, collaboration, and commitment, early diagnosis and better outcomes for PID patients in Ghana are achievable.

21/04/2026

Primary Immunodeficiency is a group of conditions that are often under-recognized, yet early awareness and timely diagnosis can greatly improve patient outcomes.

The Ghana Patient Organisation for Primary Immunodeficiencies, in collaboration with IPOPI & PSG, invites all healthcare professionals to a symposium themed:

Primary Immunodeficiency in Ghana: Bridging Awareness, Care, and Support.”

📅 Date: Tuesday, 28th April, 2026
🕓 Time: 4:00 PM
📍 Zoom

This important session will focus on improving awareness, strengthening early diagnosis, and enhancing care and support for individuals living with primary immunodeficiencies in Ghana.

📌Participation is FREE for all healthcare workers.

All doctors, nurses, pharmacists, and allied health professionals are encouraged to attend and contribute to improving patient care.

Together, we can strengthen awareness and improve outcomes.