Main Track: Althuraya Ballroom A&B
Opening Session
Chairman: Prof. Ayman El-Hattab
Consultant Clinical Genetics at Burjeel Medical City, University Hospital Sharjah, Kanad Hospital, and Genesis Healthcare Center, UAE
09:30 am - 09:40 am
Opening remarks
Prof. Ayman El Hattab
Congress Chairman, MENA Congress for Rare Diseases
09:40 am - 10:00 am
From orphan to priority: a journey through rare diseases
Dr. Joanne Sadier
Associate Professor of Genetics & Biomedical Sciences, College of Health Sciences, Abu Dhabi University, Abu Dhabi, UAE
10:00 am - 10:20 am
Rare diseases: Multiple facets of psycho-social impact on families
Mrs. Renate Baur-Richter
Inclusion and Accessibility Strategist, Access for All - Institute for Accessibility and Inclusion, Abu Dhabi, UAE
Main Track: Althuraya Ballroom A&B
Opening Ceremony
In the presence and under the patronage of H.E. Sheikh Nahayan Mabarak Al Nahayan, Cabinet Member and Minister of Tolerance and Coexistence
10:20 am - 10:25 am
The UAE National Anthem and Verses from the Holy Quran
10:25 am - 10:30 am
Welcome remarks
Prof. Ayman El Hattab
Congress Chairman, MENA Congress for Rare Diseases
10:30 am - 10:45 am
Opening speech
H.E. Sheikh Nahayan Mabarak Al Nahayan
Cabinet member and Minister of Tolerance and Coexistence
10:45 am - 10:50 am
Opening remarks
Dr. Shamsheer Vayalil
Founder and Chairman, Burjeel Holdings, Abu Dhabi, UAE
10:50 am - 11:00 am
Faculty and Committee group photo
11:00 am - 11:10 am — Coffee Break
Pre-congress side-meeting: Al Mas Hall
Global Nursing Network for Rare Diseases 2nd Meeting:
Establishing Regional and National Networks - Part 1
08:30 am - 01:00 pm
Roundtable meeting (by invitation only) (Opening ceremony and coffee break 10:20 am - 11:10 am)
Ms. Sue Baker
Meeting Convenor, Global Nursing Network for Rare Diseases 2nd Meeting & Program Director, Rare Care Centre, Perth Children’s Hospital, Perth, Australia
Ms. Tessa Diaczun
Nurse Practitioner and Clinical Lead, BC Children’s Hospital Slocan Site Redevelopment Project, BC Children’s Hospital, Vancouver, Canada
Ms. Sharron Meadows
Neuromuscular Nurse Specialist, Auckland District Health Board, Auckland, New Zealand
Ms. Emma Michl
Metabolism Nurse Practitioner & Advanced Practice Nurse II, Division of Genetics & Genomics, Boston Children’s Hospital, Boston, USA
Pre-congress side-meeting: Althuraya Ballroom B
MENA Preventive Medicine Summit - Part 1
Chairperson: Dr. Nawal Al Kaabi
Chairperson, MENA Preventive Medicine Summit & Consultant Pediatric Infectious Diseases, Sheikh Khalifa Medical City, Abu Dhabi, UAE
11:10 am - 11:20 am
Opening remarks: MENA Preventive Medicine Summit
Dr. Nawal Al Kaabi
Chairperson, MENA Preventive Medicine Summit & Consultant Pediatric Infectious Diseases, Sheikh Khalifa Medical City, Abu Dhabi, UAE
11:20 am - 11:40 am
The present and the future of newborn screening
Dr. Laila Abdel Wareth
Chief Executive Officer, National Reference Laboratory (NRL) and Chair of Clinical Pathology, Cleveland Clinic Abu Dhabi (CCAD), Abu Dhabi, UAE
11:40 am - 12:00 pm
Large scale genome sequencing: Evidence to equitable implementation
Dr. Val Zvereff
Medical Director, Clinical Genomics, G42 Healthcare, Abu Dhabi, UAE
12:00 pm - 12:20 pm
Myths and facts related to preventing disabilities: positive parental approaches
Prof. Eman Gaad
Dean of Faculty of Education and Professor of Special and Inclusive Education, British University, Dubai, UAE
12:20 pm - 12:40 pm
Pediatrics immunization, what is new?
Dr. Huda Aldhanhani
Consultant Pediatric Infectious Diseases, Sheikh Khalifa Medical City, Abu Dhabi, UAE
12:40 pm - 01:00 pm
The role of early intervention in preventing psychological complications among children with neurodevelopmental problems
Dr. Tahir Saeed
Consultant Clinical Psychologist; CEO, Irish Wellness Medical Center; and CEO, Consultants Medical Center, Abu Dhabi, UAE
Pre-congress side-meeting: Althuraya Ballroom A
MENA Association for Genetic Counselors Annual Meeting 2024 - Part 1
Chairperson: Ms. Maria Antonela Axinte
Certified Genetic Counselor, Dna Longevity, Dubai, UAE
11:30 am - 11:40 am
Opening note: MENA Association for Genetic Counselors Annual Meeting, first edition
Ms. Maria Antonela Axinte
Certified Genetic Counselor, Dna Longevity, Dubai, UAE
11:40 am - 12:00 pm
Significant role of regional genetic counseling - pathways to become a Genetic Counselor
Dr. Muna Al Saffar
Master of Genetic Counseling Program Director and Assistant Professor, Department of Genetic and Genomics, College of Medicine and Health Sciences, United Arab Emirates University, Al Ain City, UAE
12:00 pm - 12:20 pm
Genetic counselors role in the genomic era
Ms. Maria Antonela Axinte
Certified Genetic Counselor, Dna Longevity, Dubai, UAE
12:20 pm - 12:40 pm
Whole genome sequencing as an effective first tier test in underserved populations
Mr. Alan Taylor
Certified Genetic Counselor, Al Jalila Children’s Specialty Hospital, Dubai, UAE
12:40 pm - 01:00 pm
The role of genetic counselors in IVF processes
Mrs. Dianne Alameddine
Certified Genetic Counselor, Igenomix, Dubai, UAE
01:00 pm - 02:00 pm — Lunch Break
Pre-congress side-meeting: Althuraya Ballroom B
MENA Preventive Medicine Summit - Part 2
Chairperson: Dr. Nawal Al Kaabi
Chairperson, MENA Preventive Medicine Summit & Consultant Pediatric Infectious Diseases, Sheikh Khalifa Medical City, Abu Dhabi, UAE
02:00 pm - 02:20 pm
Pre-implantation and prenatal genetic testing: prevention of inherited genetic & chromosomal diseases
Mrs. Sahar Abdelaziz
Clinical Operations Manager, First Genomix Laboratory, Dubai, UAE
02:20 pm -02:40 pm
All infants protection against RSV
Dr. Huda Aldhanhani
Consultant Pediatric Infectious Diseases, Sheikh Khalifa Medical City, Abu Dhabi, UAE
02:40 pm - 03:00 pm
Comprehensive strategies for beta thalassemia prevention: exploring premarital, prenatal, and beyond
Prof. Haleama Al Sabbah
Professor, Department of Public Health, College of Health Sciences, Abu Dhabi University, Abu Dhabi, UAE
Pre-congress side-meeting: Althuraya Ballroom A
MENA Association for Genetic Counselors Annual Meeting 2024 - Part 2
Chairperson: Ms. Maria Antonela Axinte
Certified Genetic Counselor, Dna Longevity, Dubai, UAE
02:00 pm - 02:20 pm
Genetics of male breast cancer and beyond: there is more than meets the eye!
Mr. Rifaat R. Rawashdeh
DOH Licensed, ABGC Certified Genetic Counselor, Oncology Institute, Cleveland Clinic Abu Dhabi, UAE
02:20 pm - 02:40 pm
Genetic counselling in the UAE: corporate office perspectives
Ms. Laura Paquette
DOH Licensed & ABGC Certified Genetic Counselor, Abu Dhabi Health Services Company (SEHA), Abu Dhabi, UAE
02:40 pm - 04:00 pm
Panel discussion: Challenges and opportunities of genetic counseling practice in the MENA region
Ms. Maria Antonela Axinte
Certified Genetic Counselor, Dna Longevity, Dubai, UAE
Mrs. Shruti Shenbagam
Certified Genetic Counselor, Al Jalila Children’s Specialty Hospital, Dubai, UAE
Mrs. Sonika Sachanandani-Phulwani
Licensed Genetic Counselor, M42 (Biogenix), Abu Dhabi, UAE
Mrs. Hibat Omer
Medical Geneticist and Founder of Genomics Hub, Abu Dhabi, UAE
Dr. Cristina Skrypnyk
Consultant Medical Geneticist, Genetics & Inherited Disorders, Al Jawhara Center for Molecular Medicine, Manama, Kingdom of Bahrain
Pre-congress side-meeting: Althuraya Ballroom B
Global Nursing Network for Rare Diseases 2nd Meeting:
Establishing Regional and National Networks - Part 2
Chairperson: Dr. Dale Pugh
Project Consultant, Rare Care Centre, Perth Children’s Hospital, Perth, Australia
03:00 pm - 03:20 pm
Nursing in rare disease across the healthcare system: the Boston Children's Hospital NORD center of excellence experience
Ms. Emma Michl
Metabolism Nurse Practitioner & Advanced Practice Nurse II, Division of Genetics & Genomics, Boston Children’s Hospital, Boston, USA
03:20 pm - 03:40 pm
Pediatric nurse-led clinics and the management of neuromuscular disorders in New Zealand
Ms. Sharron Meadows
Neuromuscular Nurse Specialist, Auckland District Health Board, Auckland, New Zealand
03:40 pm - 04:00 pm
Nurses’ role in newborn screening and integrated rare disease program in the Philippines
Ms. Aster Lynn Sur
Supervising Nurse and Project Development Officer IV, Institute of Human Genetics, National Institutes of Health, University of the Philippines Manila, Manila, Philippines
04:00 pm - 04:30 pm — Coffee Break
Concurrent Sessions: Althuraya Ballroom B
Autism and rare diseases
Chairperson: Ms. Ambreen Suhaib
Advocate for Autism Awareness & Acceptance, Writer, and Mother to Twins Boys with Autism, Dubai, UAE
04:30 pm - 04:50 pm
Inter relationship between gene abnormalities and neurodevelopmental disorders
Dr. Shola Faniran
Consultant Developmental Pediatrics, Mediclinic City Hospital, Dubai, UAE
04:50 pm - 05:10 pm
Navigating dual challenges: assessing for autism in children with rare diseases
Dr. Haneesha Pinnamaraju
Neurodevelopmental & Behavioral Pediatrics, Neuropedia Children's Neuroscience Center, Dubai & Sharjah, UAE
05:10 pm - 05:30 pm
Autism from the perspective of a parent to a child with Cri du chat syndrome
Ms. Laura Laugier
Founder, Coach, and Mentor, Neurodiverse Families Events, and Mother of a Child with 5p Deletion Syndrome, Dubai, UAE
05:30 pm - 05:50 pm
Neurodivergence and co-occurring rare diseases
Mrs. Karen Kehdy
Neurodiversity Advocate, Writer, and Founder of POD Concept, and Mother of a Child with Autism, Dubai, UAE
Concurrent Sessions: Althuraya Ballroom A
Alkaptonuria: a rare metabolic disease
Chairperson: Prof. Mohammed Alsbou
Professor, Clinical Pharmacology and Pharmacogenetics, College of Medicine, Ajman University, Ajman, UAE
04:30 pm - 04:50 pm
Alkaptonuria: from basic research to clinical trial, a success story from Jordan
Prof. Mohammed Alsbou
Professor, Clinical Pharmacology and Pharmacogenetics, College of Medicine, Ajman University, Ajman, UAE
04:50 pm - 05:10 pm
Clinical manifestations of alkaptonuria in pediatric patients
Dr. Maryam Amirrad
Consultant Pediatrician and Assistant Professor, College of Medicine, Ajman University, Ajman, UAE
05:10 pm - 05:30 pm
Surgical and orthopedic manifestations in patients with alkaptonuria
Dr. Amer Al Ani
Consultant Surgeon, Clinical Assistant Professor, and Head of Clinical and Medical Training, College of Medicine, Ajman University, Ajman, UAE
برنامج تدريبي: قاعة الماس
منهجية بوب لتأهيل الحواس (اليوم الأول)
05:00 pm - 09:00 pm
أسس علم تحليل الحواس
أ.د بهاء الدين جلال
مدير مركز هيلب للشرق الاوسط وشمال افريقيا, مدينة الكويت, الكويت