Continuing Medical Education Evaluation Form
Lecture: From orphan to priority: a journey through rare diseases Speaker: Dr. Joanne Sadier
Lecture: Rare diseases: Multiple facets of psycho-social impact on families Speaker: Mrs. Renate Baur-Richter
Lecture: The present and the future of newborn screening Speaker: Dr. Laila Abdel Wareth
Lecture: Large scale genome sequencing: Evidence to equitable implementation Speaker: Dr. Val Zvereff
Lecture: Myths and facts related to preventing disabilities: positive parental approaches Speaker: Prof. Eman Gaad
Lecture: Pediatrics immunization, what is new? Speaker: Dr. Huda Aldhanhani
Lecture: The role of early intervention in preventing psychological complications among children with neurodevelopmental problems Speaker: Dr. Tahir Saeed
Lecture: Significant role of regional genetic counseling - pathways to become a Genetic Counselor Speaker: Dr. Muna Al Saffar
Lecture: Genetic counselors role in the genomic era Speaker: Ms. Maria Antonela Axinte
Lecture: Whole genome sequencing as an effective first tier test in underserved populations Speaker: Mr. Alan Taylor
Lecture: The role of genetic counselors in IVF processes Speaker: Mrs. Dianne Alameddine
Lecture: Pre-implantation and prenatal genetic testing: prevention of inherited genetic & chromosomal diseases Speaker: Mrs. Sahar Abdelaziz
Lecture: All infants protection against RSV Speaker: Dr. Huda Aldhanhani
Lecture: Comprehensive strategies for beta thalassemia prevention: exploring premarital, prenatal, and beyond Speaker: Prof. Haleama Al Sabbah
Lecture: Genetics of male breast cancer and beyond: there is more than meets the eye! Speaker: Mr. Rifaat R. Rawashdeh
Lecture: Genetic counselling in the UAE: corporate office perspectives Speaker: Ms. Laura Paquette
Lecture: Nursing in rare disease across the healthcare system: the Boston Children's Hospital NORD center of excellence experience Speaker: Ms. Emma Michl
Lecture: Pediatric nurse-led clinics and the management of neuromuscular disorders in New Zealand Speaker: Ms. Sharron Meadows
Lecture: Nurses’ role in newborn screening and integrated rare disease program in the Philippines Speaker: Ms. Aster Lynn Sur
Lecture: Inter relationship between gene abnormalities and neurodevelopmental disorders Speaker: Dr. Shola Faniran
Lecture: Navigating dual challenges: assessing for autism in children with rare diseases Speaker: Dr. Haneesha Pinnamaraju
Lecture: Autism from the perspective of a parent to a child with Cri du chat syndrome Speaker: Ms. Laura Laugier
Lecture: Neurodivergence and co-occurring rare diseases Speaker: Mrs. Karen Kehdy
Lecture: Alkaptonuria: from basic research to clinical trial, a success story from Jordan Speaker: Prof. Mohammed Alsbou
Lecture: Clinical manifestations of alkaptonuria in pediatric patients Speaker: Dr. Maryam Amirrad
Lecture: Surgical and orthopedic manifestations in patients with alkaptonuria Speaker: Dr. Amer Al Ani
Lecture: أسس علم تحليل الحواس Speaker: أ.د بهاء الدين جلال-
Lecture: Neuroimmune diseases: an overview Speaker: Dr. Fatmah Al-Zahmi
Lecture: Presentation of myasthenia gravis in adults and children Speaker: Dr. Deeb Kayed
Lecture: Journey of a child into myasthenia Gravis. Snowflake in the desert Speaker: Dr. Khedidja Hedna, Ms. Yousra Hedna
Lecture: Atypical hemolytic uremic syndrome Speaker: Prof. Loai Eid
Lecture: Cardiac tumors: an overview of diagnosis and management Speaker: Dr. Haitham Talo
Lecture: The road map of children’s interstitial lung disease Speaker: Dr. Rania Abusamra
Lecture: صعوبات تشخيص الأمراض النادرة Speaker: الأستاذة مروة المنهالي
Lecture: نظرة العائلة والمجتمع للأشخاص المصابين بالأمراض النادرة Speaker: الاستاذة سلمى الشيخ
Lecture: التحديات في الحصول على العلاجات والخدمات للأمراض النادرة Speaker: الدكتورة فداء ذياب
Lecture: Gene therapy with voretigene neparvovec for RPE65 retinopathy: the KKESH experience Speaker: Dr. Rola Ba-Abbad
Lecture: New technology in vision impairment Speaker: Mr. Mohammed AlBlowi
Lecture: The landscape of pediatric-onset neurogenetic disorders in the MENA region Speaker: Dr. Mohamed Babiker
Lecture: Signs of spinal muscular atrophy Speaker: Dr. Vivek Mundada
Lecture: How to correctly diagnose a patient with a neurological rare disease by using genomics, deep phenotyping, and AI Speaker: Dr. Ersen Kavak, Dr. Tolga Aslan
Lecture: Early diagnosis of acid sphingomyelinase deficiency: addressing neurological manifestations Speaker: Prof. Khalaf Gargary
Lecture: Early detection, early defense: recognizing signs of immunodeficiency Speaker: Dr. Shuayb Elkhalifa
Lecture: The different faces of inborn errors of immunity Speaker: Dr. Hiba Shendi
Lecture: Non-transfusion-dependent beta-thalassemia: from bench to bedside Speaker: Prof. Khaled Musallam
Lecture: Paradigm shift in the treatment of hemophilia and rare bleeding disorders Speaker: Dr. Mohammad Fahed Abdullah
Lecture: Models and roles of comprehensive multidisciplinary care for Rare Disease Speaker: Ms. Eleonora Brero
Lecture: To kiss or not to kiss? The arduous path of iron from plasma transferrin to hemoglobin: relevance to sideroblastic anemias Speaker: Dr. Amel Hamdi
Lecture: Neuroendocrine tumors: A zebra among horses Speaker: Dr. Hassan Jaafar
Lecture: Duchenne muscular dystrophy: First gene therapy experience from Sheikh Khalifa Medical City Speaker: Dr. Omar Ismayl
Lecture: Novel B-glucan based disease modifying treatment adjuvant in Duchenne muscular dystrophy Speaker: Dr. Samuel JK Abraham
Lecture: Importance of raising awareness about Duchenne Speaker: Dr. Khawla Al Shehhi
Lecture: The importance of staging and stage wise intervention in Duchenne muscular dystrophy – a decade of experience in integrated rehabilitation approach Speaker: Dr. Bremadesam Raman Lakshmi
Lecture: Syndrome without a name clinic: A multidisciplinary approach in Cardiff, Wales Speaker: Mrs. Zoe Morrison
Lecture: Unleashing potential: A transdisciplinary approach to education and empowered futures Speaker: Mr. Vinu Johnson
Lecture: Overall Angelman landscape from family support to clinical trials Speaker: Mr. Kyle Rooney
Lecture: Developmental and behavioral aspects of Angelman syndrome Speaker: Dr. Zeinab Alloub
Lecture: Developmental and behavioral aspects of Angelman syndrome Speaker: Dr. Samar Almuntaser
Lecture: The Angelman syndrome therapeutic pipeline & FAST's roadmap to a cure 2.0 Speaker: Mrs. Amelia Beatty
Lecture: Learning from a child with Angelman syndrome Speaker: Mr. Abdul Mujeer Shaikh
Lecture: My experience with a brother with Angelman Speaker: Ms. Shooq Alameri
Lecture: Parents' experience with a child with Angelman syndrome and how to overcome the challenges Speaker: Mrs. Sally Asfour
Lecture: Access to orphan drugs challenges and opportunities Speaker: Dr. Rania Al Dweik
Lecture: Regulatory perspective on Orphan medications Speaker: Mrs. Kefah Al Qawasmeh
Lecture: How health insurance treats rare diseases Speaker: Dr. Yaser Sabsabi
Lecture: Navigating insurance challenges: The struggles of parents for children with rare diseases and disabilities Speaker: Dr. Zeinab Al Agha
Lecture: Importance of rare disease registries in expediting new treatments to the clinic Speaker: Dr. Souad Messahel
Lecture: Combining registry and real-world data to support the national coordination system of scientific research on rare diseases in China Speaker: Prof. Gong Mengchun
Lecture: Unified healthcare training: empowering medical and patient interfacing professionals to provide compassionate healthcare to people of determination Speaker: Ms. Fatima Al Sakkaf, Mrs. Areen Abuhejleh, Ms. Nipa Bhuptani, Ms. Amina Maliki
Lecture: ENPP1 deficiency across the age spectrum Speaker: Prof. Zulf Mughal
Lecture: Transforming the management of rare diseases: ASMD (acid sphingomyelinase deficiency) and Pompe disease Speaker: Dr. Khalid Al-Thihli
Lecture: Shine a light on alpha-mannosidosis: it's a matter of time Speaker: Dr. Rasha Al Safi
Lecture: Immersive virtual reality: a tool for treatment and management of children with autism and rare diseases Speaker: Mr. Sonal (Sunny) Ahuja
Lecture: Unravelling CDKL5 deficiency: from diagnosis to management Speaker: Prof. Sunny Philip
Lecture: The promise of gene therapies in the limb girdle muscular dystrophies Speaker: Dr. Nicholas Johnson
Lecture: Microbiome and rare diseases Speaker: Prof. M. Azzam Kayasseh
Lecture: Genome oasis Speaker: Ms. Mariam Alhammadi
Lecture: Rare diseases in the MENA region: past, present, and future Speaker: Prof. Tawfeg Ben-Omran
Lecture: Establishing rare disease center in Pakistan: a country with high burden of genetic diseases Speaker: Prof. Huma Cheema
Lecture: Odyssey of neurogenetics disorders at National Research Centre, Egypt: known and emerging themes Speaker: Prof. Maha Zaki
Lecture: Skeletal dysplasia: Overview and differential diagnosis Speaker: Prof. Zulf Mughal
Lecture: Common disorders that have available treatments and optimal management for HPP Speaker: Prof. Zulf Mughal
Lecture: Cases workshop: common symptoms and different diagnosis Speaker: Prof. Zulf Mughal
Lecture: Persons living with rare diseases and universal health coverage: which way forward? Speaker: Ms. Alexandra Heumber Perry
Lecture: Co-designing a Rare Care Centre with patients and families Speaker: Ms. Sue Baker, Mrs. Alexa Burgess
Lecture: Driving patient-oriented international collaborations to accelerate equitable access to diagnosis and management of rare diseases Speaker: Dr. Nisha Venugopal
Lecture: Journey to cure Micheal Speaker: Mr. Terry Pirovolakis
Lecture: Championing the extraordinary: A parent's odyssey from caring for an ultra-rare child, building a nonprofit, and strengthening the community Speaker: Mrs. Parvathy Krishnan
Lecture: Nutritional support for children with neurodevelopmental disorders Speaker: Prof. Mohamad Miqdady
Lecture: Overview of hippotherapy as a treatment tool Speaker: Mr. Muhammad Dahdouh
Lecture: Treatment of skeletal deformities in patients with rare diseases Speaker: Dr. Zaid Al Aubaidi
Lecture: Recommendations, policy implications and a roadmap to improve oral health for people of determination and rare disease Speaker: Dr. Shiamaa Almashhadani
Lecture: Special care dentistry: breaking the barriers Speaker: Dr. Ilhaam Abbas
Lecture: Genetic evaluation for children with neurodevelopmental disabilities Speaker: Dr. Anwar Baban
Lecture: Psychosocial stressors related to children with special needs Speaker: Dr. Rasha Abdelrahman
Lecture: Uncommon path: a doctor’s journey with a rare disease Speaker: Dr. Zainab Al-Sulaitti
Lecture: Huntington in the MENA region: prevalence, challenges, & opportunities Speaker: Mr. Svein Olaf Olsen
Lecture: A plan to care then to eradicate Huntington disease in UAE Speaker: Prof. Pierre Krystkowiak
Lecture: A multi-disciplinary model of care in Huntington disease Speaker: Ms. Ruth Hosken
Lecture: The Undiagnosed Diseases Network International (UDNI) Speaker: Prof. Domenica Taruscion
Lecture: Obstacles and solutions for rare and undiagnosed disease research and diagnostics Speaker: Prof. Uğur Özbek
Lecture: Results of a 12-month prospective study for the frequency of α-mannosidosis within MPS like phenotype patients Speaker: Mr. Simon Watzinger
Lecture: Navigating the gray: Understanding variants of uncertain significance in genetic diagnostics Speaker: Dr. Hasan Tawamie
Lecture: Uncovering previously undetected, complex genetic mutations with whole genome sequencing Speaker: Dr. Erin Connolly-Strong
Lecture: Unifying efforts and empowering patients - a call for action: global alliance for rare diseases Speaker: Dr. Hala Zaid
Lecture: UAE Landscape for clinical trials in rare diseases Speaker: Mr. Rohan Simon
Lecture: Breaking barriers: unveiling extraordinary success story in a rare disease study Speaker: Dr. Yasser Ghoneim
Lecture: The impact of epigenetic factors on management and outcome of rare disease Speaker: Prof. Mahir Al-Hilali
Lecture: Genetic diseases: inheritance and prevention Speaker: Mrs. Dianne Alameddine