8:30 AMWelcomeMrs. Nafisa Tawfiq
Session 1: Policies
Moderator: Mrs. Nafisa Tawfiq
8:35 AMThe Impact of Patient Organizations on Rare Disease ResearchDr. Gulcin Gumus
Session 2: Policies & Education Challenges
Moderator: Mrs. Maha Al Kaabi Dr. Ruba Tabari
9:00 AM
Discussion Session on Inclusive Educationa and School Bullying
Mrs. Bedour Abdelrahim Alharmoodi
Mrs. Muza Al Kaabi
Mrs. Aisha Zaidani
10:00 AMCoffee Break
10:30 AMQuran KareemHero. Al Bah Mohamed
10:35 AMOpening CeremonyProf. Fatma Al Jasmi
H.E Hussain Al Rand
H.E Abdullah Bin Sugat
Mrs. Nafisa Tawfiq
Debate Session 3: My Story Can Make A Difference (Stories of Experiences, Expertise & Prevention)
Moderator: Dr. Azhar Talal Ms. Bushra Hamasha
10:55 AMUndiagnosed Family Experience (Mayed & Mera) - UAEMs. Fawzia Al Bloushi
11:05 AMGCC Family Support Experience - OMANMs. Asma Said Al Ismaili
11:15 AMWhat is Spinal Muscular Atrophy? (Sponsored)
Dr. Haitham El Bashir
11:30 AMSMA Patient Treatment Experience- QatarMr. Deaa Darwich
11:40 AM
Bassmah Association Experience in Supporting People with Genetics Disease
Dr. Sayyaf Almarshadi
11:50 AMWellness Industry from Bahrain (Bahrain Society for the Care of Diabetes Patients).
Mr. Zakarya Ibrahim Alkadhim
12:00 PM
It is All About Hope
Mrs. Amal Tolba
12:10 PMMother ExperienceMrs. Lynn Barghout
12:20 PMGlobal Action Driven for Persons Living with a Rare Disease and FamiliesDolores Cvitičanin
12:35 PMQ&A Session
12:40 PMShare Your Story WinnersTBA
1:00 PMLunch Break
Session 4: Centers Services of POD and Family Support programs
Moderators: Mrs. Yasmeen Kamal (Mother) - Mrs. Nafisa Tawfiq
2:00 PMMinistry of Community DevelopmentMrs. Aamna Al Hashmi
2:10 PMCommunity Development AuthorityDr. Hussain Maseeh
2:20 PMFamily Care AuthorityMrs. Razna Al Ahbabi
2:30 PMZayed Higher Organization for People of DeterminationDr. Mahmoud Al shatheli
2:40 PMSharjah City for Humanitarian ServicesMrs. Muna Al Yafie
2:50 PMMake A Wish FoundationMr. Hani Al Zubaidi
3:00 PMPatient Centricity (Sponsored)Dr. Jean Joury
3:10 PMRare Stories: Creating A Strong Community (Sponsored)Dr. Davor Duboka
Session 5: Stem Cell Therapy Discussion
3:30 PMDebate Session: Stem Cell TherapyProf. Fatma Al Jasmi
Dr. John D. Phillips
4:30 PMQ&A Session
4:40 PMClosing RemarksMrs. Nafisa Tawfiq

Mrs. Nashmeya Al Fili
Dr. Khalid Almehiri
5:00 PM6:00 PM
Family Psychological Support Session - Family Caregiver Support Session
Dr. Azhar Abu Ali
Dr. Ruba Tabari
Dr. Zainab Ibrahim
Mrs. Raisa Alfalasi
5:00 PM6:00 PMPhysiotherapy- Rehabilitation Services and Child Development WorkshopMr. Sakher Bani Hamad
Ms. Amal Alshmlan
Ms. Ola El Khatib
Mrs. Zakeya Alriyami
6:00 PM7:00 PMFamily Support Group -MPSMs. Hiba Yassin
5:00 PM6:00 PMTherapeutic Nutrition WorkshopMrs. Sana Tayseer Al Kurdi
Ms. Unita Liza Botes
6:00 PM7:00 PM
First Aid and Home Care Workshop
Mr. Jay Pedrola
Day 2 - February 26, 2023
3:00 PM5:00 PMDealing with Sports Injuries in HemophiliaMr. Siju kanampurathukudy Paul

© Copyright 2022  UAE Rare Disease Society