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. The organization’s 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. 

During the past 12 months, the MENA Organization for Rare Diseases has achieved 12 magnificent milestones:

1. The organization’s members have increased from two (the founders Ayman El-Hattab and Mais Kanan) at the time of establishment to ten members currently: Prof. Ayman El-Hattab (Founder & President), Engineer Mais Kanan (Co-founder & Director), Mrs. Hala Tannnira (Patient Advocacy), Dr. Fida Dyab (Family Support), Engineer Ayoub Rahmani (IT), Engineer Shahad Khattab (Business Development), Ms. Razan Hajir (Media), Mrs. Mais Nour (Events & Communication), Ms. Maria Antonela Axinte (Education & Counseling), and Ms. Faye Patdu (Finance).

2. The organization website was established: https://www.menararediseases.org/

3. Social media platforms were created: 

https://www.facebook.com/menaorganizationforrarediseases/ 

https://www.instagram.com/mena_rare_diseases/  

https://www.linkedin.com/in/mena-organization-rare-diseases-50634a24a/ 

https://twitter.com/menararedisease  

4. A YouTube channel was built: 

https://www.youtube.com/@MENARareDiseases 

5. Starting a monthly newsletter

6. Rare Disease Support Groups online platform was created to connect people involved in rare diseases: https://connect.menararediseases.org/

7. Rare Disease Doctors Network was created to list physicians providing care for people with rare diseases

8. Establishing partnership with Huntington International Association

9. Became a member in Rare Disease International 

10. Establishing daughter organizations:

MENA Huntington Association

MENA Angelman Association

MENA Duchenne Association 

11. Participation and partnership in meeting and conferences:

Exhibitor, Accessibility Expo 2022, 15-17 Nov 2022 

Strategic Partner, International Conference for Autism & Neurodevelopmental Disorders (ICAN), Dubai, 28-30 April 2023

Strategic partner, 3rd MENA Metabolic & Genetic Conference, Muscat, Oman, 4-6 May

2023

Knowledge Partner, PrecisionMed Exhibition and Sumit (PMES), Dubai, 23-24 May 2023

Endorser, Illuminating the Future: Non-Invasive Perinatal Testing (NIPT), Dubai, 21-22 June 2023

12. MENA Organization for Rare Diseases Annual Meeting 2023 was held in Dubai, 3-5 March 2023: https://2023.menararediseases.com/  

109 Speakers (including 34 international speakers from 19 different countries)

122 Activities: 98 presentations, 15 workshops, 9 group meetings 

Attendance: ~ 700 (20% from outside UAE) 

Such a successful first year gives MENA Organization for Rare Diseases more strength and determination in keep working hard to continue growing and expanding its activities aiming to achieve more toward its goals of education, connection, and support. The organization has started arranging the MENA Organization for Rare Diseases Annual Meeting and Exhibition 2024 that will be held in Dubai during the period 1-4 February 2024. This meeting will be the largest event for rare diseases in the region with more than 120 speakers and more than 1000 expected attendees. In addition to this event, the organization will start other conferences related to rare diseases and people of determination. The organization will establish partnership with other organizations involved in rare diseases and people of determination and will participate in more conferences and meetings. The organization will work on expanding the Rare Disease Support Groups and the Rare Disease Doctors Network and establishing more disease-specific associations. The team will continue to grow as the organization will continue recruiting skilled, experienced, and enthusiastic members.