The A project By Angela Migowa PEDIATRIC RHEUMATOLOGISTAGA

The “A project” By Angela Migowa PEDIATRIC RHEUMATOLOGIST-AGA KHAN UNIVERSITY HOSPITAL NAIROBI MBCHB-UON, MMED-AKUHN, PEDIATRIC RHEUMATOLOGY-MCGILL UNIVERSITY HEALTH CENTRE

Objective To explain the background of the “A project” To highlight importance of the “A project”

The J -Project

The J-PROJECT To this end, the following five objectives are targeted for attainment by the end of 2020: 1. EDUCATION of medical students and healthcare professionals should be improved, with the inclusion in the curriculum of PID diseases as an emerging and increasingly important field of clinical medicine. Continuing medical education is also required for physicians practicing in primary care settings and hospitals. 2. PUBLIC AWARENESS should be raised to publicize the fact that most PID patients remain undiagnosed and untreated. 3. PID GENETIC DIAGNOSTICS should be managed free of charge in each of the J PROJECT countries. 4. A PID REGISTER should be established in every J PROJECT country and following diagnosis, data for all PID patients should be entered into national and international databases. 5. PERSONALIZED IMMUNOGLOBULIN REPLACEMENT and HEMATOPOIETIC STEM CELL TRANSPLANTATION should be made available to PID patients, and should not be restricted by funding or infrastructure constraints.

The A-Project is defined as a professional one-day meeting to raise clinician awareness for Primary Immunodeficiency (PID) in 40 African countries in 5 years.

Why the “A project”? Discussing local clinical practice in PID care. Raising the awareness and level of knowledge on PID diagnosis and care. Establishment of National registry. Local adaptation of the African registry Establishing national PID patient groups. Networking and collaboration