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The UAE Rare Disease Society

@uaerds

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The Official account of the UAE Rare Disease Society
الحساب الرسمي لجمعية الإمارات للأمراض النادرة
MOCD177/2018
📩: [email protected]
📞: +971564132132

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Ready for new ideas, real experiences and practical answers? Join us on Day 2. 👀

How can inclusion drive growth? How can families, schools and organisations provide better support?

At the Industry Leadership Hub, sponsored by @dubai.investments.dxb, experts will explore rare disease advocacy, student wellbeing, family support, accessible opportunities, organisational change and safer learning environments.

Expect practical guidance, meaningful conversations and ideas you can take beyond the sessions.

🎤 Swipe through for a glimpse of some of the speakers joining us on Day 2. There are more speakers and sessions still to come.

📅 20 October 2026
📍 Dubai World Trade Centre
🎟️ Free to attend

Don’t miss Day 2! Register FREE through the link in our bio. 💙

هل أنتم مستعدون لأفكار جديدة، وتجارب واقعية، وإجابات عملية؟ انضموا إلينا في اليوم الثاني. 👀

كيف يمكن للشمول أن يدعم النمو؟ وكيف يمكن للأسر والمدارس والمؤسسات تقديم دعم أفضل؟

في ملتقى (رواد التمكين) التي ترعاها دبي للاستثمار، يستعرض الخبراء موضوعات تشمل مناصرة قضايا الأمراض النادرة، ورفاه الطلبة، ودعم الأسر، والفرص الدامجة، والتغيير المؤسسي، وتوفير بيئات تعليمية أكثر أماناً.

استفيدوا من الإرشادات العملية والحوارات الهادفة والأفكار التي يمكن تطبيقها بعد انتهاء الجلسات.

🎤 تصفّحوا المنشور للاطلاع على لمحة عن بعض المتحدثين المشاركين معنا في اليوم الثاني، فهناك المزيد من المتحدثين والجلسات بانتظاركم.

📅 20 أكتوبر 2026
📍 قاعات زعبيل – 4-5-6 - مركز دبي التجاري العالمي
🎟️ الحضور مجاناً

لا تفوّتوا اليوم الثاني، وسجّلوا مجاناً عبر الرابط في النبذة التعريفية. 💙

#AccessAbilitiesExpo #AAE2026 #DubaiInvestments #IndustryLeadershipHub #Accessibility #Inclusion #AAE8thEdition #AccessibilityForAll #Dubai

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تشرفت بالدعوة الكريمة من جمعية الإمارات للأمراض النادرة لحضور حفل تكريم المرأة الإماراتية.

مبادرة إنسانية جميلة تحتفي بعطاء المرأة وقوتها، وتسلط الضوء على الأمهات اللواتي يواجهن تحديات الأمراض النادرة بكل صبر وأمل.

فكل امرأة قوية تستحق التقدير، وتستحق أيضاً الدعم والاحتواء. ❤️

كل الشكر والتقدير للقائمين على هذه المبادرة الملهمة. 🌷

Honoured to be invited by the UAE Rare Disease Society to attend a special celebration recognizing Emirati women.

A meaningful initiative celebrating women’s strength and contributions, while highlighting the resilience of mothers navigating the challenges of rare diseases with courage and hope.

Every strong woman deserves not only recognition, but also care, understanding, and support. ❤️

Sincere thanks to everyone behind this inspiring initiative. 🌷
@uaerds

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⁨ ⁨ ⁨ انطلاقاً من التزامنا بتمكين المرأة ودعم المجتمع، شاركت مجموعة اينوك كراعي بلاتيني في فعالية يوم المرأة الإماراتية التي نظمتها جمعية الإمارات للأمراض النادرة، احتفاءً بإنجازات المرأة الإماراتية، وتعزيزاً للوعي بالأمراض النادرة، وتقديراً لقوة الأمهات والأسر وتفانيهن في رعاية أبنائهن.

#اينوك #يوم_المرأة_الإماراتية

As part of our commitment to empowering women and supporting our community, ENOC participated as a Platinum Sponsor of the UAE Rare Diseases Society’s Emirati Women’s Day event, celebrating the achievements of Emirati women while raising awareness of rare diseases and recognising the strength and dedication of mothers and families.

#ENOC #EmiratiWomensDay⁩⁩⁩

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Today is my Lynn’s 19th birthday. ❤️ The girl who gave my voice a purpose and taught me that sometimes our greatest challenges lead us to the work we were meant to do.

Thank you to the UAE Rare Disease Society for making this day extra special by recognizing my work as an advocate mother in commemoration of Emirati Women’s Day.

Lynn’s journey with Erythromelalgia over the past 11 years opened my eyes to the realities so many rare disease families face. This award belongs to her, too. I couldn’t be prouder to celebrate this moment with her by my side.

Happy birthday, my love! You will always be my why. ❤️

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الشكر لجمعية الإمارات للأمراض النادرة على احتضانها توقيع كتابي كان يوما مميزا في رحلتي لن أنساه

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How much do you know about rare diseases and the people living with them?
The UAE Rare Diseases Association ( @uaerds ) joins AccessAbilities Expo 2026 to help more people understand these conditions, highlight the creativity of those living with them and introduce its activities and membership opportunities.

This focus on awareness and inclusion continues across AccessAbilities Expo, where families and professionals can connect with organisations and specialists, explore assistive technologies and take part in inclusive activities over three days.

🎟️ Be part of it—register for your FREE Visitor Pass in just 10 seconds via the link in our bio.

📅 19–21 October 2026
📍 Za’abeel Halls 4–6 | Dubai World Trade Centre

ماذا تعرفون عن الأمراض النادرة وعن الأشخاص الذين يعيشون معها؟‏

تشارك جمعية الإمارات للأمراض النادرة في إكسبو أصحاب الهمم 2026 لتعريف المزيد من الناس بهذه الحالات، وإبراز إبداعات الأشخاص المتعايشين معها، والتعريف بأنشطتها وفرص الانضمام إلى عضويتها.

ويمتد هذا الاهتمام بالتوعية والشمول إلى مختلف فعاليات إكسبو أصحاب الهمم، حيث يمكن للعائلات والمتخصصين التواصل مع المؤسسات والخبراء، واستكشاف التقنيات المساعدة والمشاركة في أنشطة دامجة على مدار ثلاثة أيام.

🎟️ كونوا جزءاً من الحدث—سجّلوا للحصول على بطاقة دخول الزوار المجانية خلال 10 ثوانٍ فقط عبر الرابط في النبذة التعريفية.

📅 19–21 أكتوبر 2026
📍 قاعات زعبيل 4–6 | مركز دبي التجاري العالمي

[ accessibility solutions, inclusive design, people with disabilities, mobility solutions, disability support services, inclusive events, assistive technology ]

#AccessAbilitiesExpo #AAE2026 #Accessibility #InclusiveDesign #Dubai

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خلال المؤتمر الدولي الرابع لجمعية الإمارات للأمراض النادرة، برزت أهمية مواصلة العمل على القضايا والتحديات التي تواجه مرضى الأمراض النادرة وأسرهم.

فالأمراض النادرة لا تتطلب فقط رفع الوعي والمناصرة، بل دعماً حقيقياً، ووصولاً أفضل للرعاية، وتمكيناً للمرضى وأسرهم. وبصفتي عضواً في جمعية الإمارات للأمراض النادرة، أفخر بأن أكون جزءاً من هذه الجهود والمساهمة في رسالتها الإنسانية لخدمة المرضى وأسرهم.

During the 4th International UAE Rare Disease Society Congress, the importance of continuing to address the challenges facing people living with rare diseases and their families was strongly highlighted.

Rare diseases require more than awareness and advocacy; they require meaningful support, better access to care, and the empowerment of patients and families. As a member of the UAE Rare Disease Society, I am proud to be part of these efforts and to contribute to its humanitarian mission in supporting patients and their families.

#RareDiseases #RareDiseaseAwareness #PatientAdvocacy #PatientSupport #UAE @uaerds

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Have you ever heard about Niemann Pick Type C?

19th October is a day recognized as Global Niemann-Pick Disease Awareness Day.

It's a time we raise awareness and support those affected by this ultra-rare genetic condition, including Niemann-Pick Disease Type C (NP-C).

The entire month of October is also recognized as Niemann-Pick Awareness Month.

#niemannpicktypec #uaerdsc2026 #uaerds #raredisease

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في اليوم العالمي للقلب تذكر دائماً: قلبٌ سليم يعني حياةً مليئة بالأمل والعطاء."• قلبك هو محرك حياتك فاحرص على أن ينبض بقوة وعافية كل يوم."
• "لا تنتظر ظهور الألم لتفكر في قلبك فالوقاية اليوم هي راحة الغد وطريقك لحياة أطول."

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Session 7 Highlights | UAERDSC 2026 🧬

Day 2 of the 4th International UAE Rare Disease Society Congress continued with Session 7, featuring Dr. Zulf Mughal, UAE, who presented “Re-thinking Growth Promotion in Skeletal Dysplasias.”

Dr. Mughal shared valuable insights into the evolving approach to growth promotion in skeletal dysplasias, highlighting the need to reconsider traditional perspectives as knowledge and therapeutic possibilities continue to advance.

His presentation explored important considerations surrounding growth in individuals with skeletal dysplasias, emphasizing the value of individualized care, specialist evaluation, and informed clinical decision-making when addressing these rare skeletal conditions.

Thank you, Dr. Zulf Mughal, for sharing your expertise and contributing to the scientific exchange at UAERDSC 2026.

United for Rare: Empowering Families, Advancing Care.

#UAERDSC2026 #UnitedForRare #SkeletalDysplasia #GrowthDisorders #RareBoneDiseases #RareDiseases #GrowthPromotion #RareDiseaseCare #ScientificProgram #CongressHighlights

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Session 7 Highlights | UAERDSC 2026 🧬

Day 2 of the 4th International UAE Rare Disease Society Congress continued with Session 7, featuring Dr. Asma Deeb, UAE, Chair of the Paediatric Endocrinology Division at Sheikh Shakhbout Medical City, Abu Dhabi, UAE, who presented “Obesity: Genetic Perspective.”

Dr. Deeb shared valuable insights into the genetic factors associated with obesity, highlighting how genetics can contribute to its development and why understanding these underlying factors is important when evaluating individuals with complex or unusual presentations.

Her presentation emphasized the importance of looking beyond conventional causes of obesity, particularly when an underlying genetic condition may be involved, and highlighted the value of genetic evaluation and personalized approaches to care.

Thank you, Dr. Asma Deeb, for sharing your expertise and contributing to the scientific exchange at UAERDSC 2026.

United for Rare: Empowering Families, Advancing Care.

#UAERDSC2026 #UnitedForRare #Obesity #GeneticObesity #Genetics #PaediatricEndocrinology #GeneticDisorders #RareDiseases #PrecisionMedicine #RareDiseaseCare #ScientificProgram #CongressHighlights

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Session 6 Highlights | UAERDSC 2026 🧬

Day 2 of the 4th International UAE Rare Disease Society Congress continued with Session 6, featuring Dr. Theodore W. Laetsch, USA, Attending Physician at the Cancer Center, Children’s Hospital of Philadelphia (CHOP), who presented “The New Landscape for Precision Medicine.”

Dr. Laetsch shared valuable insights into the evolving landscape of precision medicine, highlighting how advances in molecular understanding and targeted approaches are reshaping the way rare diseases are investigated and managed.

His presentation emphasized the growing potential of personalized approaches to care, where a deeper understanding of the molecular drivers of disease can help inform diagnosis, therapeutic strategies, and future research.

Thank you, Dr. Theodore W. Laetsch, for sharing your expertise with our delegates and contributing to the scientific exchange at UAERDSC 2026.

United for Rare: Empowering Families, Advancing Care.

#UAERDSC2026 #UnitedForRare #PrecisionMedicine #RareDiseases #PersonalizedMedicine #Genomics #TargetedTherapy #RareDiseaseResearch #RareDiseaseCare #CHOP #ScientificProgram #CongressHighlights

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