Agenda
TRACK 3 - PATIENTS & FAMILY
| Time-In | Activity | Speaker |
|---|---|---|
| 8:30 AM | Welcome | Mrs. Nafisa Tawfiq |
| Session 1: Policies Moderator: Mrs. Nafisa Tawfiq |
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| 8:35 AM | The Impact of Patient Organizations on Rare Disease Research | Dr. Gulcin Gumus |
| Session 2: Policies & Education Challenges Moderator: Mrs. Maha Al Kaabi Dr. Ruba Tabari |
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| 9:00 AM | Discussion Session on Inclusive Educationa and School Bullying | Mrs. Bedour Abdelrahim Alharmoodi |
| Mrs. Muza Al Kaabi | ||
| Mrs. Aisha Zaidani | ||
| 10:00 AM | Coffee Break | |
| 10:30 AM | Quran Kareem | Hero. Al Bah Mohamed |
| 10:35 AM | Opening Ceremony | Prof. 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 |
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| 10:55 AM | Undiagnosed Family Experience (Mayed & Mera) - UAE | Ms. Fawzia Al Bloushi |
| 11:05 AM | GCC Family Support Experience - OMAN | Ms. Asma Said Al Ismaili |
| 11:15 AM | What is Spinal Muscular Atrophy? (Sponsored) | Dr. Haitham El Bashir |
| 11:30 AM | SMA Patient Treatment Experience- Qatar | Mr. Deaa Darwich |
| 11:40 AM | Bassmah Association Experience in Supporting People with Genetics Disease | Dr. Sayyaf Almarshadi |
| 11:50 AM | Wellness 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 PM | Mother Experience | Mrs. Lynn Barghout |
| 12:20 PM | Global Action Driven for Persons Living with a Rare Disease and Families | Dolores Cvitičanin |
| 12:35 PM | Q&A Session | |
| 12:40 PM | Share Your Story Winners | TBA |
| 1:00 PM | Lunch Break | |
| Session 4: Centers Services of POD and Family Support programs Moderators: Mrs. Yasmeen Kamal (Mother) - Mrs. Nafisa Tawfiq |
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| 2:00 PM | Ministry of Community Development | Mrs. Aamna Al Hashmi |
| 2:10 PM | Community Development Authority | Dr. Hussain Maseeh |
| 2:20 PM | Family Care Authority | Mrs. Razna Al Ahbabi |
| 2:30 PM | Zayed Higher Organization for People of Determination | Dr. Mahmoud Al shatheli |
| 2:40 PM | Sharjah City for Humanitarian Services | Mrs. Muna Al Yafie |
| 2:50 PM | Make A Wish Foundation | Mr. Hani Al Zubaidi |
| 3:00 PM | Patient Centricity (Sponsored) | Dr. Jean Joury |
| 3:10 PM | Rare Stories: Creating A Strong Community (Sponsored) | Dr. Davor Duboka |
| Session 5: Stem Cell Therapy Discussion | ||
| 3:30 PM | Debate Session: Stem Cell Therapy | Prof. Fatma Al Jasmi Dr. John D. Phillips |
| 4:30 PM | Q&A Session | |
| 4:40 PM | Closing Remarks | Mrs. Nafisa Tawfiq |
| Time-In | Time-Out | Activity | |
|---|---|---|---|
| Moderators: Mrs. Nashmeya Al Fili Dr. Khalid Almehiri |
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| 5:00 PM | 6:00 PM | Family Psychological Support Session - Family Caregiver Support Session | Dr. Azhar Abu Ali Dr. Ruba Tabari Dr. Zainab Ibrahim |
| Moderator: Mrs. Raisa Alfalasi |
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| 5:00 PM | 6:00 PM | Physiotherapy- Rehabilitation Services and Child Development Workshop | Mr. Sakher Bani Hamad Ms. Amal Alshmlan Ms. Ola El Khatib |
| Moderator: Mrs. Zakeya Alriyami |
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| 6:00 PM | 7:00 PM | Family Support Group -MPS | Ms. Hiba Yassin |
| 5:00 PM | 6:00 PM | Therapeutic Nutrition Workshop | Mrs. Sana Tayseer Al Kurdi Ms. Unita Liza Botes |
| 6:00 PM | 7:00 PM | First Aid and Home Care Workshop | Mr. Jay Pedrola |
| Day 2 - February 26, 2023 | |||
| 3:00 PM | 5:00 PM | Dealing with Sports Injuries in Hemophilia | Mr. Siju kanampurathukudy Paul |
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