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 commun

ities, 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.

๐ŸŒŸ ๐‘บ๐’•๐’–๐’…๐’†๐’๐’•๐’” & ๐‘ป๐’“๐’‚๐’Š๐’๐’†๐’†๐’” ๐‘น๐’†๐’ˆ๐’Š๐’”๐’•๐’“๐’‚๐’•๐’Š๐’๐’!Donโ€™t miss your chance to join the 3๐’“๐’… ๐‘ด๐‘ฌ๐‘ต๐‘จ ๐‘ช๐’๐’๐’ˆ๐’“๐’†๐’”๐’” ๐’‡๐’๐’“ ๐๐ž๐ฎ๐ซ๐จ๐ ๐ž๐ง๐ž๐ญ๐ข๐œ ๐ƒ๐ข๐ฌ๐จ๐ซ๐๐ž๐ซ๐ฌ 2026!...
25/04/2026

๐ŸŒŸ ๐‘บ๐’•๐’–๐’…๐’†๐’๐’•๐’” & ๐‘ป๐’“๐’‚๐’Š๐’๐’†๐’†๐’” ๐‘น๐’†๐’ˆ๐’Š๐’”๐’•๐’“๐’‚๐’•๐’Š๐’๐’!

Donโ€™t miss your chance to join the 3๐’“๐’… ๐‘ด๐‘ฌ๐‘ต๐‘จ ๐‘ช๐’๐’๐’ˆ๐’“๐’†๐’”๐’” ๐’‡๐’๐’“ ๐๐ž๐ฎ๐ซ๐จ๐ ๐ž๐ง๐ž๐ญ๐ข๐œ ๐ƒ๐ข๐ฌ๐จ๐ซ๐๐ž๐ซ๐ฌ 2026!

๐ŸŽ“ ๐‘ญ๐’“๐’†๐’† ๐’“๐’†๐’ˆ๐’Š๐’”๐’•๐’“๐’‚๐’•๐’Š๐’๐’ is now available for students and trainees โ€” seats are limited!

๐Ÿ”— Register now: menaneurogenetic.com/register

๐ŸŒŸ ๐‘บ๐’•๐’–๐’…๐’†๐’๐’•๐’” & ๐‘ป๐’“๐’‚๐’Š๐’๐’†๐’†๐’” ๐‘น๐’†๐’ˆ๐’Š๐’”๐’•๐’“๐’‚๐’•๐’Š๐’๐’!Donโ€™t miss your chance to join the 3๐’“๐’… ๐‘ด๐‘ฌ๐‘ต๐‘จ ๐‘ช๐’๐’๐’ˆ๐’“๐’†๐’”๐’” ๐’‡๐’๐’“ ๐‘ด๐’†๐’•๐’‚๐’ƒ๐’๐’๐’Š๐’”๐’Ž ๐’Š๐’ ๐‘ฏ๐’†๐’‚๐’๐’•๐’‰ ๐’‚๐’๐’… ๐‘ซ๐’Š๐’”...
24/04/2026

๐ŸŒŸ ๐‘บ๐’•๐’–๐’…๐’†๐’๐’•๐’” & ๐‘ป๐’“๐’‚๐’Š๐’๐’†๐’†๐’” ๐‘น๐’†๐’ˆ๐’Š๐’”๐’•๐’“๐’‚๐’•๐’Š๐’๐’!

Donโ€™t miss your chance to join the 3๐’“๐’… ๐‘ด๐‘ฌ๐‘ต๐‘จ ๐‘ช๐’๐’๐’ˆ๐’“๐’†๐’”๐’” ๐’‡๐’๐’“ ๐‘ด๐’†๐’•๐’‚๐’ƒ๐’๐’๐’Š๐’”๐’Ž ๐’Š๐’ ๐‘ฏ๐’†๐’‚๐’๐’•๐’‰ ๐’‚๐’๐’… ๐‘ซ๐’Š๐’”๐’†๐’‚๐’”๐’† 2026!

๐ŸŽ“ ๐‘ญ๐’“๐’†๐’† ๐’“๐’†๐’ˆ๐’Š๐’”๐’•๐’“๐’‚๐’•๐’Š๐’๐’ is now available for students and trainees โ€” seats are limited!

๐Ÿ”— Register now: https://menametabolism.com/register

๐ŸŒŸ ๐‘บ๐’•๐’–๐’…๐’†๐’๐’•๐’” & ๐‘ป๐’“๐’‚๐’Š๐’๐’†๐’†๐’” ๐‘น๐’†๐’ˆ๐’Š๐’”๐’•๐’“๐’‚๐’•๐’Š๐’๐’!Donโ€™t miss your chance to join the 5๐’•๐’‰ ๐‘ด๐‘ฌ๐‘ต๐‘จ ๐‘ช๐’๐’๐’ˆ๐’“๐’†๐’”๐’” ๐’‡๐’๐’“ ๐‘น๐’‚๐’“๐’† ๐‘ซ๐’Š๐’”๐’†๐’‚๐’”๐’†๐’” 2026!๐ŸŽ“ ๐‘ญ๐’“๐’†๐’† ๐’“๐’†...
23/04/2026

๐ŸŒŸ ๐‘บ๐’•๐’–๐’…๐’†๐’๐’•๐’” & ๐‘ป๐’“๐’‚๐’Š๐’๐’†๐’†๐’” ๐‘น๐’†๐’ˆ๐’Š๐’”๐’•๐’“๐’‚๐’•๐’Š๐’๐’!

Donโ€™t miss your chance to join the 5๐’•๐’‰ ๐‘ด๐‘ฌ๐‘ต๐‘จ ๐‘ช๐’๐’๐’ˆ๐’“๐’†๐’”๐’” ๐’‡๐’๐’“ ๐‘น๐’‚๐’“๐’† ๐‘ซ๐’Š๐’”๐’†๐’‚๐’”๐’†๐’” 2026!

๐ŸŽ“ ๐‘ญ๐’“๐’†๐’† ๐’“๐’†๐’ˆ๐’Š๐’”๐’•๐’“๐’‚๐’•๐’Š๐’๐’ is now available for students and trainees โ€” seats are limited!

๐Ÿ”— Register now: menarares.com/register

๐ŸŒŸ ๐‘ฌ๐’‚๐’“๐’๐’š ๐‘ฉ๐’Š๐’“๐’… ๐‘น๐’†๐’ˆ๐’Š๐’”๐’•๐’“๐’‚๐’•๐’Š๐’๐’!Donโ€™t miss your chance to join the 3๐’“๐’… ๐‘ด๐‘ฌ๐‘ต๐‘จ ๐‘ช๐’๐’๐’ˆ๐’“๐’†๐’”๐’” ๐’‡๐’๐’“ ๐๐ž๐ฎ๐ซ๐จ๐ ๐ž๐ง๐ž๐ญ๐ข๐œ ๐ƒ๐ข๐ฌ๐จ๐ซ๐๐ž๐ซ๐ฌ 2026Enjoy an ๐’†...
16/04/2026

๐ŸŒŸ ๐‘ฌ๐’‚๐’“๐’๐’š ๐‘ฉ๐’Š๐’“๐’… ๐‘น๐’†๐’ˆ๐’Š๐’”๐’•๐’“๐’‚๐’•๐’Š๐’๐’!

Donโ€™t miss your chance to join the 3๐’“๐’… ๐‘ด๐‘ฌ๐‘ต๐‘จ ๐‘ช๐’๐’๐’ˆ๐’“๐’†๐’”๐’” ๐’‡๐’๐’“ ๐๐ž๐ฎ๐ซ๐จ๐ ๐ž๐ง๐ž๐ญ๐ข๐œ ๐ƒ๐ข๐ฌ๐จ๐ซ๐๐ž๐ซ๐ฌ 2026

Enjoy an ๐’†๐’™๐’„๐’๐’–๐’”๐’Š๐’—๐’† 50% ๐’…๐’Š๐’”๐’„๐’๐’–๐’๐’• on registration fees โ€” available until 30 June 2026!

๐Ÿ”— Register now: https://www.menaneurogenetic.com/register

๐ŸŒŸ ๐‘ฌ๐’‚๐’“๐’๐’š ๐‘ฉ๐’Š๐’“๐’… ๐‘น๐’†๐’ˆ๐’Š๐’”๐’•๐’“๐’‚๐’•๐’Š๐’๐’!Donโ€™t miss your chance to join the 3๐’“๐’… ๐‘ด๐‘ฌ๐‘ต๐‘จ ๐‘ช๐’๐’๐’ˆ๐’“๐’†๐’”๐’” ๐’‡๐’๐’“ ๐‘ด๐’†๐’•๐’‚๐’ƒ๐’๐’๐’Š๐’”๐’Ž ๐’Š๐’ ๐‘ฏ๐’†๐’‚๐’๐’•๐’‰ ๐’‚๐’๐’… ๐‘ซ๐’Š๐’”๐’†๐’‚๐’”๐’† 2026...
04/04/2026

๐ŸŒŸ ๐‘ฌ๐’‚๐’“๐’๐’š ๐‘ฉ๐’Š๐’“๐’… ๐‘น๐’†๐’ˆ๐’Š๐’”๐’•๐’“๐’‚๐’•๐’Š๐’๐’!

Donโ€™t miss your chance to join the 3๐’“๐’… ๐‘ด๐‘ฌ๐‘ต๐‘จ ๐‘ช๐’๐’๐’ˆ๐’“๐’†๐’”๐’” ๐’‡๐’๐’“ ๐‘ด๐’†๐’•๐’‚๐’ƒ๐’๐’๐’Š๐’”๐’Ž ๐’Š๐’ ๐‘ฏ๐’†๐’‚๐’๐’•๐’‰ ๐’‚๐’๐’… ๐‘ซ๐’Š๐’”๐’†๐’‚๐’”๐’† 2026

Enjoy an ๐’†๐’™๐’„๐’๐’–๐’”๐’Š๐’—๐’† 50% ๐’…๐’Š๐’”๐’„๐’๐’–๐’๐’• on registration fees โ€” available until 30 June 2026!

๐Ÿ”— Register now: menametabolism.com/register

We were honored to host Mrs. Duaa Aburizik as our Guest of the Month, shedding light on the hidden struggles behind rare...
31/03/2026

We were honored to host Mrs. Duaa Aburizik as our Guest of the Month, shedding light on the hidden struggles behind rare diseases in the MENA region.

Rare disease care is not a single prescription โ€” it is a lifelong journey.

From fragmented reimbursement systems to limited patient representation in decision-making, families continue to face significant barriers in accessing the care they need. As Mrs. Duaa highlighted, caregivers and patients carry the burden, yet their voices are often unheard.

But change is possible.

When rare diseases become a national priority, through stronger policies, early access programs, and collaborative partnerships, we can move toward a system that values long-term outcomes, equity, and dignity.

Because rare disease reimbursement is not a luxury โ€” it is a lifeline.

Letโ€™s continue to advocate for systems that listen, include, and act.

ุชุดุฑูู†ุง ุจุงุณุชุถุงูุฉ ุงู„ุณูŠุฏุฉ ุฏุนุงุก ุฃุจูˆุฑุฒู‚ ูƒุถูŠูุฉ ุงู„ุดู‡ุฑุŒ ุญูŠุซ ุณู„ุทุช ุงู„ุถูˆุก ุนู„ู‰ ุงู„ุชุญุฏูŠุงุช ุงู„ุฎููŠุฉ ุงู„ุชูŠ ุชูˆุงุฌู‡ ู…ุฑุถู‰ ุงู„ุฃู…ุฑุงุถ ุงู„ู†ุงุฏุฑุฉ ููŠ ู…ู†...
31/03/2026

ุชุดุฑูู†ุง ุจุงุณุชุถุงูุฉ ุงู„ุณูŠุฏุฉ ุฏุนุงุก ุฃุจูˆุฑุฒู‚ ูƒุถูŠูุฉ ุงู„ุดู‡ุฑุŒ ุญูŠุซ ุณู„ุทุช ุงู„ุถูˆุก ุนู„ู‰ ุงู„ุชุญุฏูŠุงุช ุงู„ุฎููŠุฉ ุงู„ุชูŠ ุชูˆุงุฌู‡ ู…ุฑุถู‰ ุงู„ุฃู…ุฑุงุถ ุงู„ู†ุงุฏุฑุฉ ููŠ ู…ู†ุทู‚ุฉ ุงู„ุดุฑู‚ ุงู„ุฃูˆุณุท ูˆุดู…ุงู„ ุฅูุฑูŠู‚ูŠุง.

ุฑุนุงูŠุฉ ุงู„ุฃู…ุฑุงุถ ุงู„ู†ุงุฏุฑุฉ ู„ูŠุณุช ุนู„ุงุฌุงู‹ ูˆุงุญุฏุงู‹ โ€” ุจู„ ุฑุญู„ุฉ ุชู…ุชุฏ ู…ุฏู‰ ุงู„ุญูŠุงุฉ.

ูƒู…ุง ุฃุดุงุฑุช ุงู„ุณูŠุฏุฉ ุฏุนุงุกุŒ ุชุชุญู…ู„ ุงู„ุนุงุฆู„ุงุช ูˆุงู„ู…ุฑุถู‰ ุงู„ุนุจุก ุงู„ุฃูƒุจุฑุŒ ู„ูƒู† ุฃุตูˆุงุชู‡ู… ู„ุง ุชูุณู…ุน ุจุงู„ุดูƒู„ ุงู„ูƒุงููŠ ููŠ ู‚ุฑุงุฑุงุช ุงู„ุชุบุทูŠุฉ ุงู„ุตุญูŠุฉ ูˆุตู†ุน ุงู„ุณูŠุงุณุงุช.

ูˆุฑุบู… ุงู„ุชุญุฏูŠุงุชุŒ ูุฅู† ุงู„ุชุบูŠูŠุฑ ู…ู…ูƒู†.

ุนู†ุฏู…ุง ุชุตุจุญ ุงู„ุฃู…ุฑุงุถ ุงู„ู†ุงุฏุฑุฉ ุฃูˆู„ูˆูŠุฉ ูˆุทู†ูŠุฉุŒ ู…ู† ุฎู„ุงู„ ุณูŠุงุณุงุช ูุนู‘ุงู„ุฉุŒ ูˆุจุฑุงู…ุฌ ุงู„ูˆุตูˆู„ ุงู„ู…ุจูƒุฑุŒ ูˆุงู„ุดุฑุงูƒุงุช ุจูŠู† ุงู„ู‚ุทุงุนูŠู† ุงู„ุนุงู… ูˆุงู„ุฎุงุตุŒ ูŠู…ูƒู†ู†ุง ุจู†ุงุก ู†ุธุงู… ุตุญูŠ ุฃูƒุซุฑ ุนุฏุงู„ุฉ ูˆุงุณุชุฏุงู…ุฉ.

ู„ุฃู† ุชูˆููŠุฑ ุงู„ุฑุนุงูŠุฉ ู„ู„ุฃู…ุฑุงุถ ุงู„ู†ุงุฏุฑุฉ ู„ูŠุณ ุฑูุงู‡ูŠุฉ โ€” ุจู„ ุดุฑูŠุงู† ุญูŠุงุฉ.

ู…ุนุงู‹ุŒ ู†ุญูˆ ุฃู†ุธู…ุฉ ุตุญูŠุฉ ุชุณุชู…ุน ูˆุชูุดุฑูƒ ูˆุชูุญุฏุซ ูุฑู‚ุงู‹ ุญู‚ูŠู‚ูŠุงู‹.

Due to the recent circumstances, 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 taking place in Abu Dhabi will be ๐ฉ๐จ๐ฌ๐ญ๐ฉ๐จ๐ง๐ž๐ to ...
14/03/2026

Due to the recent circumstances, 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 taking place in Abu Dhabi will be ๐ฉ๐จ๐ฌ๐ญ๐ฉ๐จ๐ง๐ž๐ to ๐Ÿ‘โ€“๐Ÿ“ ๐’๐ž๐ฉ๐ญ๐ž๐ฆ๐›๐ž๐ซ ๐Ÿ๐ŸŽ๐Ÿ๐Ÿ”.

All previously registered attendees will ๐ซ๐ž๐ญ๐š๐ข๐ง their registration, and the agenda will remain the same.

Today, on Rare Disease Day, we stand in solidarity with the 300+ million people worldwide living with a rare disease, ma...
28/02/2026

Today, on Rare Disease Day, we stand in solidarity with the 300+ million people worldwide living with a rare disease, many of them across the Middle East and North Africa.

At the MENA Organization for Rare Diseases, we are committed to raising awareness, supporting patients and families, advancing research, and advocating for equitable access to diagnosis, treatment, and care.

Letโ€™s unite to shine a light on rare diseases, because rare is many, and together we are stronger.

We are pleased to announce the ๐“๐จ๐ฉ ๐Ÿ‘ ๐€๐›๐ฌ๐ญ๐ซ๐š๐œ๐ญ ๐–๐ข๐ง๐ง๐ž๐ซ๐ฌ 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”. Selected for thei...
20/02/2026

We are pleased to announce the ๐“๐จ๐ฉ ๐Ÿ‘ ๐€๐›๐ฌ๐ญ๐ซ๐š๐œ๐ญ ๐–๐ข๐ง๐ง๐ž๐ซ๐ฌ 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”. Selected for their scientific excellence, innovation, and clinical impact, these outstanding research contributions represent significant advancements in the field of rare diseases.

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

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