Participation as partner and exhibitor at the AccessAbilities Expo 

MENA Organization for Rare diseases will participate as partner and exhibitor at the AccessAbilities Expo that will be held in Dubai World Trade Center from 9 to 11 October. AccessAbilities Expo is the largest event for people of determination in the Middle East, Africa, and South Asia region. AccessAbilities Expo is the region’s leading platform to showcase the latest global innovations that can benefit people of determination to live more productive, independent, and fulfilling lives.

PrecisionMed Exhibition and Sumit

MENA Organization for Rare Diseases has participated at the PrecisionMed Exhibition and Summit (PMES) as knowledge partner and exhibitor. PMES was held in Dubai World Trade Centre on 23 and 24 May 2023. Being a knowledge partner, MENA Organization for Rare Diseases supported the PMES by sharing knowledge and experience related to rare genetic diseases in the MENA region.

ICAN 

MENA Organization for Rare Diseases participated as a strategic partner at the International Conference for Autism and Neurodevelopmental Disorders (ICAN) that was held in Dubai from 28 to 30 April 2023. MENA Organization for Rare Diseases received an Appreciation Award to honour the great support and distinguished contribution of the organization in the conference.

MENA Metabolic & Genetic Conference in Oman

MENA Organization for Rare Diseases has participated in the 3rd MENA Metabolic & Genetic Conference that was held between 4 and 6 May 2023 in Muscat, Oman. MENA Organization for Rare Diseases was a strategic partner supporting the MENA Metabolic & Genetic Conference by sharing knowledge and experience related to rare genetic diseases in the MENA region. 

Endorsement of the forum: Illuminating the Future by Non-Invasive Perinatal Testing (NIPT)

MENA Organization for Rare Diseases endorsed the forum Illuminating the Future: Non-Invasive Perinatal Testing (NIPT) that took place in Jumeirah Emirates Tower in Dubai on 21 and 22 June 2023. This forum aimed to expand knowledge and provide valuable insights into this ground-breaking approach to prenatal screening using the non-invasive perinatal testing (NIPT).

Gilani Mobility 

The management team of MENA Organization for Rare Diseases, Dr. Ayman El-Hattab and Engineer Mais Kanaan had the pleasure to visit Gilani Mobility's state-of-the-art facility in Dubai. Gilani Mobility, originally founded in Australia, has brought its expertise in mobility aids to the Middle East, serving the entire region with top-quality products and services including assistive technology, mobility aids, driving solutions, wheelchair accessible vehicles, and much more. 

Launching of an educational YouTube channel

MENA Organization for Rare Diseases has taken a significant step towards its mission to educate and spread knowledge about rare diseases by starting a YouTube channel. This channel is designed to be a rich repository of educational material, knowledge, and advocacy for rare diseases. One of the key features of the YouTube channel is the vast collection of over 80 lectures from the conference the MENA Organization for Rare Diseases Annual Meeting 2023.

Introducing Rare Disease Support Groups

In pursuit of its mission to bring together individuals impacted by rare diseases, MENA Organization for Rare Diseases has unveiled an innovative online platform - Rare Disease Support Groups. This groundbreaking website enables patients, caregivers, families, healthcare professionals, researchers, advocates, and others involved in rare diseases to connect and join disease-specific groups.

Anniversary 

The members of the MENA Organization for Rare Diseases have celebrated on 15 June 2023 the first anniversary of establishing the MENA Organization for Rare Diseases. MENA Organization for Rare Diseases was established on June 2022 in Dubai to serve and support people with rare diseases in the Middle East and North Africa (MENA) region. Our goals are to educate and spread awareness about rare diseases, connect patients and healthcare provides to exchange knowledge and experience, and support people with rare diseases and their families. 

محاضرة في مجلس حتا لأهالي أصحاب الهمم

قدمت الدكتورة فداء ذياب، رئيسة قسم دعم أهالي أصحاب الهمم والأمراض النادرة بجمعية الأمراض النادرة في الشرق الأوسط وشمال افريقيا، محاضرة في مجلس حتا لأهالي أصحاب الهمم في منطقه حتا يوم الاثنين الموافق 5-6-2023. وكانت المحاضرة بعنوان "ملهمتي روضه" عرضت خلالها الدكتورة فداء تجربتها كأم لطفلة لديها مرض نادر يسمى متلازمة انجلمان. ولقد حضر الندوة عدد من أهالي أصحاب الهمم ومعلمات التربية الخاصة. وقد أثنى الحضور على الدور الفعال التي تقوم به جمعية الأمراض النادرة في الشرق الأوسط وشمال افريقيا، وبالأخص قسم دعم أهالي أصحاب الهمم والأمراض النادرة برأسه الدكتورة فداء ذياب حيث يهدف هذا القسم لتثقيف وتوعية الأهالي في كيفية التعامل مع أبنائهم من أصحاب الهمم والأمراض النادرة للتخفيف من الصعوبات ومواجهة التحديات التي تعترضهم

International Business Magazine 

International Business Magazine is a UAE-based company with a subscriber base of more than 50,000 that includes investors, C-suite employees, key stakeholders, policymakers, and government bureaucrats. They deliver latest news from the financial world and keenly promote innovative solutions in the industry. 

World Business Outlook

World Business Outlook is a Singapore-based business magazine. The website delivers all the latest global financial news and the latest insights, market views and industry talk from across the sectors. The magazine pages adorn the most innovative companies in its sector and opinions from the world's top business leaders.

The WonderMoM

WonderMom provides a wide range of sections covering all aspects of motherhood and womanhood, being the most efficient to a mother's need of the hour. Along with a comprehensive guide of parenting and lifestyle, the magazine also delivers premium content, expert input, and latest news.

Medarabia

Medarabia is the largest healthcare and medical network in the Middle East. It was founded to empower the healthcare industry by enabling users to share their experiences and post reviews.