MENA Congress for Rare Diseases

MENA Congress for Rare Diseases MENA Congress for Rare Diseases was established to serve and support people with rare diseases. Join us in this mission!

We are an organization dedicated to improving the lives of people living with rare diseases in the MENA (Middle East and North Africa) region. Our mission is three-fold:

Educate:
We raise awareness among the public and healthcare professionals about rare diseases, to facilitate earlier diagnoses and better care for patients. Connect:
We bring together patients, their families, and affected communities, to create a network of mutual support. Support:
We provide practical and emotional support to patients and their loved ones, helping them navigate the healthcare system and access treatments. Together, we work to ensure that people living with rare diseases in our region can thrive and receive the best possible care.

The ๐Ÿ“๐ญ๐ก ๐Œ๐„๐๐€ ๐‚๐จ๐ง๐ ๐ซ๐ž๐ฌ๐ฌ ๐Ÿ๐จ๐ซ ๐‘๐š๐ซ๐ž ๐ƒ๐ข๐ฌ๐ž๐š๐ฌ๐ž๐ฌ ๐Ÿ๐ŸŽ๐Ÿ๐Ÿ” is approachingJoin regional and international experts shaping the future of...
15/01/2026

The ๐Ÿ“๐ญ๐ก ๐Œ๐„๐๐€ ๐‚๐จ๐ง๐ ๐ซ๐ž๐ฌ๐ฌ ๐Ÿ๐จ๐ซ ๐‘๐š๐ซ๐ž ๐ƒ๐ข๐ฌ๐ž๐š๐ฌ๐ž๐ฌ ๐Ÿ๐ŸŽ๐Ÿ๐Ÿ” is approaching

Join regional and international experts shaping the future of rare disease field and explore new horizons and collaborative opportunities aiming ultimately to provide better care for people with rare diseases

๐Ÿ—“๏ธ ๐ŸŽ๐Ÿ—โ€“๐Ÿ๐Ÿ ๐€๐ฉ๐ซ๐ข๐ฅ ๐Ÿ๐ŸŽ๐Ÿ๐Ÿ”

๐Ÿ“ ๐๐ž๐š๐œ๐ก ๐‘๐จ๐ญ๐š๐ง๐š ๐‡๐จ๐ญ๐ž๐ฅ, ๐€๐›๐ฎ ๐ƒ๐ก๐š๐›๐ข, ๐”๐€๐„

๐Ÿ”— Register now: ๐ฆ๐ž๐ง๐š๐ซ๐š๐ซ๐ž.๐œ๐จ๐ฆ

Are you a parent of a child with a rare disease? ู‡ู„ ุฃู†ุช ูˆุงู„ุฏ/ุฉ ุทูู„ ู…ุตุงุจ ุจู…ุฑุถ ู†ุงุฏุฑุŸWe invite you to take part in an anony...
05/01/2026

Are you a parent of a child with a rare disease?
ู‡ู„ ุฃู†ุช ูˆุงู„ุฏ/ุฉ ุทูู„ ู…ุตุงุจ ุจู…ุฑุถ ู†ุงุฏุฑุŸ

We invite you to take part in an anonymous online survey for parents and caregivers of children with rare diseases in the MENA region.

Your experience matters. By sharing your journey, you can help highlight the real needs and challenges faced by rare disease families.

The survey is completely anonymous, confidential, and takes only a few minutes to complete.

๐Ÿ‘‰ Make your voice heardโ€”take the survey: https://forms.gle/sfw6Mv8HD13pczBj8

ู†ุฏุนูˆูƒ ู„ู„ู…ุดุงุฑูƒุฉ ููŠ ุงุณุชุจูŠุงู† ุฅู„ูƒุชุฑูˆู†ูŠ ุณูุฑู‘ููŠ ู…ุฎุตุต ู„ุฃูˆู„ูŠุงุก ุฃู…ูˆุฑ ูˆู…ู‚ุฏู…ูŠ
ุงู„ุฑุนุงูŠุฉ ู„ู„ุฃุทูุงู„ ุงู„ู…ุตุงุจูŠู† ุจุฃู…ุฑุงุถ ู†ุงุฏุฑุฉ ููŠ ู…ู†ุทู‚ุฉ ุงู„ุดุฑู‚ ุงู„ุฃูˆุณุท ูˆุดู…ุงู„ ุฃูุฑูŠู‚ูŠุง.

ุชุฌุฑุจุชูƒ ู…ู‡ู…ุฉุŒ ูˆู…ุดุงุฑูƒุชูƒ ุณุชุณุงุนุฏ ุนู„ู‰ ุชุณู„ูŠุท ุงู„ุถูˆุก ุนู„ู‰ ุงุญุชูŠุงุฌุงุช ูˆุชุญุฏูŠุงุช ุนุงุฆู„ุงุช ุงู„ุฃู…ุฑุงุถ ุงู„ู†ุงุฏุฑุฉ.

ุงู„ุงุณุชุจูŠุงู† ุณุฑูŠ ุชู…ุงู…ู‹ุง ูˆู„ุง ูŠุณุชุบุฑู‚ ุณูˆู‰ ุจุถุน ุฏู‚ุงุฆู‚.
https://forms.gle/sfw6Mv8HD13pczBj8 :ุงุฌุนู„ ุตูˆุชูƒ ู…ุณู…ูˆุนู‹ุง โ€” ุดุงุฑูƒ ููŠ ุงู„ุงุณุชุจูŠุงู† ๐Ÿ‘ˆ

๐ŸŒŸ ๐„๐š๐ซ๐ฅ๐ฒ ๐๐ข๐ซ๐ ๐‘๐ž๐ ๐ข๐ฌ๐ญ๐ซ๐š๐ญ๐ข๐จ๐ง ๐„๐ง๐๐ฌ ๐’๐จ๐จ๐ง!Donโ€™t miss your chance to join the ๐Ÿ“๐ญ๐ก ๐Œ๐„๐๐€ ๐‚๐จ๐ง๐ ๐ซ๐ž๐ฌ๐ฌ ๐Ÿ๐จ๐ซ ๐‘๐š๐ซ๐ž ๐ƒ๐ข๐ฌ๐ž๐š๐ฌ๐ž๐ฌ ๐Ÿ๐ŸŽ๐Ÿ๐Ÿ”Enjoy an ...
18/12/2025

๐ŸŒŸ ๐„๐š๐ซ๐ฅ๐ฒ ๐๐ข๐ซ๐ ๐‘๐ž๐ ๐ข๐ฌ๐ญ๐ซ๐š๐ญ๐ข๐จ๐ง ๐„๐ง๐๐ฌ ๐’๐จ๐จ๐ง!
Donโ€™t miss your chance to join the ๐Ÿ“๐ญ๐ก ๐Œ๐„๐๐€ ๐‚๐จ๐ง๐ ๐ซ๐ž๐ฌ๐ฌ ๐Ÿ๐จ๐ซ ๐‘๐š๐ซ๐ž ๐ƒ๐ข๐ฌ๐ž๐š๐ฌ๐ž๐ฌ ๐Ÿ๐ŸŽ๐Ÿ๐Ÿ”
Enjoy an ๐ž๐ฑ๐œ๐ฅ๐ฎ๐ฌ๐ข๐ฏ๐ž 50% ๐๐ข๐ฌ๐œ๐จ๐ฎ๐ง๐ญ on your registration fees โ€” ๐š๐ฏ๐š๐ข๐ฅ๐š๐›๐ฅ๐ž ๐ฎ๐ง๐ญ๐ข๐ฅ ๐Ÿ‘๐Ÿ ๐ƒ๐ž๐œ๐ž๐ฆ๐›๐ž๐ซ ๐Ÿ๐ŸŽ๐Ÿ๐Ÿ“!
๐Ÿ”— Register now at: menarare.com/register

๐ŸŒŸ We are honored to be guided by an exceptional ๐’๐œ๐ข๐ž๐ง๐ญ๐ข๐Ÿ๐ข๐œ ๐‚๐จ๐ฆ๐ฆ๐ข๐ญ๐ญ๐ž๐ž whose expertise and visionary leadership are shapin...
12/12/2025

๐ŸŒŸ We are honored to be guided by an exceptional ๐’๐œ๐ข๐ž๐ง๐ญ๐ข๐Ÿ๐ข๐œ ๐‚๐จ๐ฆ๐ฆ๐ข๐ญ๐ญ๐ž๐ž whose expertise and visionary leadership are shaping the success of the ๐Ÿ“๐ญ๐ก ๐Œ๐„๐๐€ ๐‚๐จ๐ง๐ ๐ซ๐ž๐ฌ๐ฌ ๐Ÿ๐จ๐ซ ๐‘๐š๐ซ๐ž ๐ƒ๐ข๐ฌ๐ž๐š๐ฌ๐ž๐ฌ ๐Ÿ๐ŸŽ๐Ÿ๐Ÿ”

๐Ÿ”— ๐…๐จ๐ซ ๐ฆ๐จ๐ซ๐ž ๐ข๐ง๐Ÿ๐จ๐ซ๐ฆ๐š๐ญ๐ข๐จ๐ง ๐š๐ง๐ ๐ญ๐จ ๐ซ๐ž๐ ๐ข๐ฌ๐ญ๐ž๐ซ: menarare.com

๐Ÿ“ข Submit Your Abstract!Gain the opportunity to win valuable prizes and present your research to a diverse audience and r...
04/12/2025

๐Ÿ“ข Submit Your Abstract!

Gain the opportunity to win valuable prizes and present your research to a diverse audience and researchers. Join us at the 5th MENA Congress for Rare Diseases 2026 in Abu Dhabi, 09โ€“11 April 2026

๐Ÿ“… Deadline: 31 January 2026
Showcase your research to leading experts in the field

โœ… Submit now: menarare.com

Can Art and Awareness Transform Life with Epidermolysis Bullosa?In the last week of October 2025, we had a discussion wi...
17/11/2025

Can Art and Awareness Transform Life with Epidermolysis Bullosa?

In the last week of October 2025, we had a discussion with Ms. Hanaa El Sadat โ€” Founder and Chairperson of Yasmin El Samra Foundation (DEBRA Egypt), an organization dedicated since 2014 to raising awareness and supporting people living with Epidermolysis Bullosa (EB) in Egypt and the Arab world.

In this heartfelt conversation, Hanaa shared her journey with her daughter Yasmin, who turned her pain into color and creativity. She spoke about the daily challenges of EB patients, the vital role of families, the importance of training healthcare providers, and how art can heal both body and spirit.

As Hanaa says:

โ€œMy message is that every person with EB deserves to live a life of discovery and hope, in a safe and caring environment.โ€

Read the full interview here: menararediseases.org/news

๐ŸŒŸ ๐„๐š๐ซ๐ฅ๐ฒ ๐๐ข๐ซ๐ ๐‘๐ž๐ ๐ข๐ฌ๐ญ๐ซ๐š๐ญ๐ข๐จ๐ง ๐๐จ๐ฐ ๐Ž๐ฉ๐ž๐ง!Donโ€™t miss your chance to join the 5๐ญ๐ก ๐Œ๐„๐๐€ ๐‚๐จ๐ง๐ ๐ซ๐ž๐ฌ๐ฌ ๐Ÿ๐จ๐ซ ๐‘๐š๐ซ๐ž ๐ƒ๐ข๐ฌ๐ž๐š๐ฌ๐ž๐ฌ 2026 in Abu Dh...
15/11/2025

๐ŸŒŸ ๐„๐š๐ซ๐ฅ๐ฒ ๐๐ข๐ซ๐ ๐‘๐ž๐ ๐ข๐ฌ๐ญ๐ซ๐š๐ญ๐ข๐จ๐ง ๐๐จ๐ฐ ๐Ž๐ฉ๐ž๐ง!
Donโ€™t miss your chance to join the 5๐ญ๐ก ๐Œ๐„๐๐€ ๐‚๐จ๐ง๐ ๐ซ๐ž๐ฌ๐ฌ ๐Ÿ๐จ๐ซ ๐‘๐š๐ซ๐ž ๐ƒ๐ข๐ฌ๐ž๐š๐ฌ๐ž๐ฌ 2026 in Abu Dhabi, 09โ€“11 April 2026.
Enjoy an exclusive early bird discount on your registration fees โ€” available until 31 December 2025!
๐Ÿ”— Register now at: https://www.menarare.com/register

09/10/2025
09/10/2025

๐Ÿคฒ The parents of of Adman explain how their family experienced the journey for his son to receive the diagnosis Duchenne.

This initiative is made in cooperation with
MENA Congress for Rare Diseases and Hala Tannira

โณ Only 2 weeks left until the 2๐ง๐ ๐Œ๐„๐๐€ ๐‚๐จ๐ง๐ ๐ซ๐ž๐ฌ๐ฌ ๐Ÿ๐จ๐ซ ๐Œ๐ž๐ญ๐š๐›๐จ๐ฅ๐ข๐ฌ๐ฆ ๐ข๐ง ๐‡๐ž๐š๐ฅ๐ญ๐ก ๐š๐ง๐ ๐ƒ๐ข๐ฌ๐ž๐š๐ฌ๐ž, ๐ƒ๐ฎ๐›๐š๐ข, 17-18 ๐Ž๐œ๐ญ๐จ๐›๐ž๐ซ 2025๐Ÿฅผ Learn f...
04/10/2025

โณ Only 2 weeks left until the 2๐ง๐ ๐Œ๐„๐๐€ ๐‚๐จ๐ง๐ ๐ซ๐ž๐ฌ๐ฌ ๐Ÿ๐จ๐ซ ๐Œ๐ž๐ญ๐š๐›๐จ๐ฅ๐ข๐ฌ๐ฆ ๐ข๐ง ๐‡๐ž๐š๐ฅ๐ญ๐ก ๐š๐ง๐ ๐ƒ๐ข๐ฌ๐ž๐š๐ฌ๐ž, ๐ƒ๐ฎ๐›๐š๐ข, 17-18 ๐Ž๐œ๐ญ๐จ๐›๐ž๐ซ 2025

๐Ÿฅผ Learn from top experts
๐Ÿค Network with healthcare leaders
๐Ÿš€ Stay ahead with the latest research and innovations

โœจ We are waiting for you there!

๐Ÿ”— Register now: metabolism.ae/registration

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