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taiba rare Taiba Rare is dedicated to making life better for people with rare diseases in the MENA region.

SCN8A-related disorders ( ) are rare genetic neurological conditions caused by mutations affecting sodium channels in th...
09/02/2026

SCN8A-related disorders ( ) are rare genetic neurological conditions caused by mutations affecting sodium channels in the brain. These mutations often lead to early-onset epilepsy, developmental delay, and movement abnormalities.

Symptoms that may suggest SCN8A-related epilepsy include seizures beginning in infancy or early childhood, especially when combined with intellectual disability, autism spectrum disorder, or movement disorders. Seizure onset is typically from birth to 18 months with an average age of onset of 4-5 months.

Seizures associated with SCN8A can be severe and difficult to control, significantly impacting cognitive development and quality of life. Early diagnosis through genetic testing is essential for personalized care planning.

Living with means managing a rare, inherited disorder of copper metabolism in which the body is unable to properly eli...
08/02/2026

Living with means managing a rare, inherited disorder of copper metabolism in which the body is unable to properly eliminate excess copper. Over time, copper accumulates in vital organs leading to progressive damage. The disease can present at any age, often with highly variable symptoms, ranging from unexplained liver disease in children to neurological or psychiatric manifestations in adolescents and adults, making diagnosis particularly complex.

Wilson disease may cause chronic hepatitis, cirrhosis, tremors, difficulty with speech and movement, mood changes, or cognitive decline. One of its hallmark signs is the Kayser–Fleischer ring, a copper deposit visible in the cornea.

Living with Wilson disease requires lifelong treatment and monitoring. Chelating agents and zinc therapies are used to reduce copper accumulation and prevent further toxicity, while regular liver function tests and neurological assessments help track disease progression. With early diagnosis, strict treatment adherence, and continuous follow-up, many individuals can lead full and productive lives.

is a group of infections caused by Aspergillus fungi, which are commonly found in the environment. While most people i...
01/02/2026

is a group of infections caused by Aspergillus fungi, which are commonly found in the environment. While most people inhale these spores without harm, individuals with weakened immune systems or underlying lung disease may develop serious complications.

The condition can range from allergic reactions to chronic pulmonary infection or invasive disease affecting multiple organs. Symptoms may include persistent cough, shortness of breath, chest pain, and fatigue, often making diagnosis challenging.

World Aspergillosis Day highlights the importance of early recognition, accurate diagnosis, and improved access to specialized care for patients facing this potentially life-threatening condition.

is a rare congenital neurological condition characterized by facial paralysis and limited eye movement. It results fro...
22/01/2026

is a rare congenital neurological condition characterized by facial paralysis and limited eye movement. It results from underdevelopment of specific cranial nerves, affecting facial expression, speech, feeding, and eye coordination from birth.

Individuals with Moebius Syndrome may face challenges related to communication, social interaction, and motor development, despite having normal intelligence. Early intervention, speech therapy, and supportive care play a crucial role in improving functional outcomes.

Alternating Hemiplegia of Childhood ( ) is an ultra-rare neurological condition that typically begins before 18 months o...
19/01/2026

Alternating Hemiplegia of Childhood ( ) is an ultra-rare neurological condition that typically begins before 18 months of age. It is characterized by recurrent episodes of temporary paralysis affecting one or both sides of the body, often accompanied by abnormal eye movements, seizures, and developmental delays.

AHC episodes can be unpredictable and triggered by stress, temperature changes, or fatigue, significantly impacting daily life for both patients and caregivers. Between episodes, individuals may experience ongoing motor and cognitive challenges.

While currently there is no cure for AHC, there is active research on new kinds of therapies. These new therapies could potentially have major impacts on the symptoms and quality of life of these patients.

Ehlers-Danlos Syndromes ( ) are a group of rare genetic connective tissue disorders that affect collagen production. Col...
13/01/2026

Ehlers-Danlos Syndromes ( ) are a group of rare genetic connective tissue disorders that affect collagen production. Collagen plays a critical role in providing strength and flexibility to skin, joints, blood vessels, and organs, making EDS a multi-system condition.

Common features include joint hypermobility, fragile or stretchy skin, chronic pain, and frequent joint dislocations. Some subtypes can involve serious complications such as vascular fragility or organ rupture, making early recognition and subtype identification extremely important.

Healthcare providers classify EDS into 13 types based on where it affects and the symptoms

is a rare, inherited neurodegenerative disorder that affects movement, cognition, and behavior. It is caused by a gene...
05/01/2026

is a rare, inherited neurodegenerative disorder that affects movement, cognition, and behavior. It is caused by a genetic mutation that leads to progressive damage of nerve cells in the brain, usually appearing in adulthood. Because symptoms develop gradually, early signs are often overlooked or misinterpreted.

People living with Huntington’s may experience involuntary movements, difficulty with coordination, changes in mood, and cognitive decline over time. The condition affects not only individuals but entire families, as it carries a 50% inheritance risk for children of an affected parent. Emotional, psychological, and social support is essential throughout the disease journey.

Huntington's disease cannot currently be prevented. There's currently no cure for Huntington's disease and no treatments that can stop the symptoms getting worse. Raising awareness helps promote early diagnosis, genetic counseling, and better support systems for families affected by Huntington’s Disease.

Hunter Syndrome, medically known as , is a rare inherited metabolic disorder caused by the absence or deficiency of a s...
29/12/2025

Hunter Syndrome, medically known as , is a rare inherited metabolic disorder caused by the absence or deficiency of a specific enzyme responsible for breaking down complex sugars in the body. When this enzyme is missing, these substances accumulate in cells, tissues, and organs, leading to progressive health complications.

This condition primarily affects boys and is passed down through families in an X-linked pattern. Symptoms usually begin in early childhood and gradually worsen over time, affecting multiple systems including the skeletal structure, respiratory system, heart, and sometimes the nervous system.

Raising awareness about is essential for improving understanding of , supporting early diagnosis, and encouraging timely referral to specialized care centers.

is a rare chromosomal disorder caused by an extra piece of chromosome 11 and 22. It leads to developmental delays, int...
25/11/2025

is a rare chromosomal disorder caused by an extra piece of chromosome 11 and 22. It leads to developmental delays, intellectual disabilities, and distinctive facial features.

Although there is no specific cure, early intervention programs focusing on physical, occupational, and speech therapy can greatly enhance the developmental outcomes of affected children. Genetic testing plays a key role in diagnosis and family counseling.

Increasing awareness helps families connect with support networks and ensures better understanding of the complexities behind chromosomal disorders.

في يومنا الوطني المجيد 🇴🇲 ، نشارك أبناء عُمان فرحة الوطن ونفخر بمسيرة نهضته المتجددة بقيادة حضرة صاحب الجلالة السلطان هي...
20/11/2025

في يومنا الوطني المجيد 🇴🇲 ، نشارك أبناء عُمان فرحة الوطن ونفخر بمسيرة نهضته المتجددة بقيادة حضرة صاحب الجلالة السلطان هيثم بن طارق المعظم – حفظه الله.

نسأل الله أن يديم على عُمان الأمن والتقدم، وأن يكتب لها مزيدًا من الازدهار في كل المجالات.

, also known as type III ( ), is a rare metabolic disorder that affects the body’s ability to break down certain suga...
16/11/2025

, also known as type III ( ), is a rare metabolic disorder that affects the body’s ability to break down certain sugars, leading to toxic buildup in cells. This results in progressive brain damage, developmental delays, and behavioral challenges.

While physical traits are mild (e.g., coarse facial features, enlarged head), internal complications include liver/spleen enlargement, hernias, and heart issues like cardiomyopathy. MPS III is divided into types IIIA, IIIB, IIIC, and IIID , with IIIA progressing fastest. Sadly, most individuals with Sanfilippo live only into adolescence or early adulthood.

Early diagnosis and supportive therapies such as , , and can improve quality of life. Research into offers hope for future treatment breakthroughs.

( ) are rare cancers that originate from hormone-producing cells. They can occur anywhere in the body, most commonly i...
11/11/2025

( ) are rare cancers that originate from hormone-producing cells. They can occur anywhere in the body, most commonly in the , , or . NETs are often slow-growing but can be difficult to diagnose due to nonspecific symptoms.

Common signs include abdominal pain, flushing, diarrhea, and unexplained weight loss. Awareness among both the public and medical professionals can help reduce the diagnostic delay, which currently averages several years.

Advances in imaging and targeted therapies are transforming care for NET patients, emphasizing the importance of continued research and awareness efforts.

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