Pre-congress side-meeting: Althuraya Ballroom B
MENA Preventive Medicine Summit

Moderator: Dr. Nawal Al Kaabi
Chairperson, MENA Preventive Medicine Summit & Consultant Pediatric Infectious Diseases, Sheikh Khalifa Medical City, Abu Dhabi, UAE

09:30 am - 09:50 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

09:50 am - 10:10 am

The present and the future of newborn screening

Prof. Laila AbdelWareth

Acting Executive Director, National Reference Laboratory (NRL) Chair of Clinical Pathology, Cleveland Clinic Abu Dhabi (CCAD) Adjunct Clinical Professor, Department of Pathology, College of Medicine & Health Sciences, Khalifa University, Abu Dhabi, UAE

10:10 am - 10:30 am

Pediatrics immunization, what is new?

Dr. Huda Aldhanhani

Consultant Pediatric Infectious Diseases, Sheikh Khalifa Medical City, Abu Dhabi, UAE

10:30 am - 11:00 am

Coffee Break

11:00 am - 11:20 am

The role of early intervention in preventing psychological complications among children with neurodevelopmental problems

Dr. Tahir Saeed

Consultant Clinical Psychology, KidsHeart Medical Center, Abu Dhabi, UAE

11:25 am - 11:45 am

Pre-impanation and prenatal genetic testing: prevention of inherited genetic & chromosomal diseases

Prof. Ayman El-Hattab

Consultant Clinical Genetics at University Hospital Sharjah, Kanad Hospital, and Genesis Healthcare Center, UAE

11:50 am - 12:10 pm

All infants protection against RSV

Dr. Huda Aldhanhani

Consultant Pediatric Infectious Diseases, Sheikh Khalifa Medical City, Abu Dhabi, UAE

12:15 pm - 12:35 pm

TBA

TBA

12:40 pm - 01:00 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

01:00 pm - 02:00 pm

Lunch Break

Pre-congress side-meeting: Althuraya Ballroom A
MENA Association for Genetic Counselors Annual Meeting 2024

Moderator: Ms. Maria Antonela Axinte
Certified Genetic Counselor, Dna Longevity, Dubai, UAE

09:15 am - 09:30 am

Opening note: MENA Association for Genetic Counselors Annual Meeting, first edition

Ms. Maria Antonela Axinte

Certified Genetic Counselor, Dna Longevity, Dubai, UAE

09:30 am - 09:50 am

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

09:50 am - 10:10 am

Genetic counselors role in the genomic era

Ms. Maria Antonela Axinte

Certified Genetic Counselor, Dna Longevity, Dubai, UAE

10:10 am - 10:30 am

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

10:30 am - 11:00 am

Coffee Break

11:00 am - 11:20 am

The role of genetic counselors in IVF processes

Mrs. Dianne Alameddine

Certified Genetic Counselor, Igenomix, Dubai, UAE

11:20 am - 11:40 am

Genetics of male breast cancer and beyond: there is more than meets the eye!

Mr. Rifaat Rawashdeh

Certified Genetic Counselor, Oncology Institute, Cleveland Clinic Abu Dhabi, Abu Dhabi, UAECertified Genetic Counselor, Oncology Institute, Cleveland Clinic Abu Dhabi, Abu Dhabi, UAE

11:40 am - 12:00 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

12:00 pm - 01:00 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. Shrutti Shenbagan

Certified Genetic Counselor, Al Jalila Children’s Specialty Hospital, Dubai, UAE

Mrs. Sonika Sachanandani-Phulwani

Certified Genetic Counselor, Mediclinic City Hospital, Dubai, UAE

Mrs. Hibat Omer

Medical Geneticist and Founder of Genomics Hub, Abu Dhabi, UAE

01:00 pm - 02:00 pm

Lunch Break

Pre-congress side-meeting: Al Mas Hall / Althuraya Ballroom A&B
Global Nursing Network for Rare Diseases 2nd Meeting:
Establishing Regional and National Networks

Moderator: Dr. Dale Pugh
Project Consultant, Rare Care Centre, Perth Children’s Hospital, Perth, Australia

08:30 am - 01:00 pm

Roundtable meeting (by invitation only) (coffee break 10:30 am - 11:00 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

01:00 pm - 02:00 pm

Lunch Break

02:00 pm - 02:20 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

02:20 pm - 02:40 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

02:40 pm - 03:00 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

Main Track: Althuraya Ballroom A&B
MENA Congress for Rare Diseases Opening Session
Rare diseases: challenges and opportunities

Moderator: Prof. Ayman El-Hattab
Consultant Clinical Genetics at University Hospital Sharjah, Kanad Hospital, and Genesis Healthcare Center, UAE

03:00 pm - 03:20 pm

Opening remarks: MENA Congress for Rare Diseases

Prof. Ayman El-Hattab

Consultant Clinical Genetics at University Hospital Sharjah, Kanad Hospital, and Genesis Healthcare Center, UAE

03:20 pm - 03:40 pm

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

03:40 pm - 04:00 pm

Rare diseases: Multiple facets of psycho-social impact on families

Mrs. Renate Baur-Richter

Inclusion and Accessibility Strategist, Abu Dhabi, UAE

04:00 pm - 04:30 pmCoffee Break

Concurrent Sessions: Althuraya Ballroom B
Autism and rare diseases

Moderator: 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, Dubai, 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

The role of primary healthcare providers in early screening and identification of markers for rare comorbid manifestations of autism

Dr. Hawk Kair

Psychologist and Autism Spectrum Disorders Consultant, Dubai Health Autism Spectrum Disorders Service Lead, Al Jalila Children's Hospital, Dubai Health, Dubai, UAE

05:50 pm - 06:10 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

Moderator: 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 Surgery, Clinical Assistant Professor, and Head of Clinical and Medical Education, 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

Chat with a representative