Events

In celebration of world primary Immunodeficiency (PI) week, which is a global awareness campaign, aiming at bringing together patients, families and health professionals to raise recognition and diagnosis of primary immunodeficiency’s (PI). The team of Pediatric and adult Immunology and allergy is planning to celebrate the occasion in our center on April 22rd 2019. The main aim of the event is to spread the awareness about early diagnosis of PID and available diagnostic testing and treatment. Also, we will celebrate our center’s success being the leader provider of advanced PI diagnostics and therapeutics including stem cell transplant for a growing list of primary immunodeficiencies in our country and our region. It will be a great chance for our team to contribute to public awareness and present our achievement in serving PI patients and families.

Objectives:

• Highlight the importance of early detection and the effectiveness Early Intervention & Treatment.
• Increase hospital staff awareness of primary Immunodeficiency (PI) through education and advocacy campaigns.
• Unite (PI) patients, families and medical staff in a partnership to improve patient’s care through education.

Key facts about PI:

1. PI affects at least 10 million people worldwide. While each of the more than 200 identified PI conditions may be rare, taken together, they are more common than childhood leukaemia and lymphoma combined and has four times the incidence of cystic fibrosis.
2. In Saudi Arabia, severe combined immunodeficiency (SCID) is estimated at 1 in 2,906 Saudi live births, which is (20×) higher than the incidence reported from the US (frequency of 1/58,000 children).
3. Around 70–80% of PI remain undiagnosed
4. Current diagnosis levels suggest that around 1 in 8-10,000 people have a genetic primary immunodeficiency that significantly affects their health
5. A simple and relatively inexpensive blood test CBC (Complete Blood Count) can identify over 95%2 of the patients.
6. Lack of awareness on PI remains a major issue, and due to this deficit, the majority of patients are diagnosed too late.
7. Unlike many rare diseases, there are many effective treatment options for PI patients, which can enable them to carry out a normal life. PI patients must therefore be diagnosed early and informed about the most adequate treatment for their particular condition.
8. None of the available therapies can reverse the damage of late diagnosis, which is why awareness and education is paramount across the World.

Facts about Immunology in KFSH&RC:

1. The leader center in the Kingdom and the region in providing early diagnosis and therapy for patients born with PI. Accepting a wide variability of PI including complex autoimmunity and immune dysregulation cases.
2. Stem cell transplantation with expanded donor source beyond family members making use of national stem cell bank and cord blood bank. Last year our center has completed 39 transplants for PI patients.
3. Stem cell transplant and supportive therapies with a success rate comparable to advanced international centers.
4. Offering patients with most updated therapies including subcutaneous immunoglobulins that could be administered safely at home
5. Gene therapy and enzyme replacement is available and successful collaboration with international centers is established.
6. Fellowship program in Pediatric and adult Immunology in Allergy is attracting new trainees and graduating competent specialist to foster collaboration with centers nationally and internationally.

Target Audience:

All Medical Staff and visitors.

Date:

Monday, 22 April 2019.

Time:

09:00– 16:00.

Location:

1st floor, North Tower, King Faisal Specialist Hospital and Research Centre - Riyadh.