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

is a rare neurodevelopmental disorder that primarily affects girls and is most commonly associated with pathogenic var...
06/10/2026

is a rare neurodevelopmental disorder that primarily affects girls and is most commonly associated with pathogenic variants in the MECP2 gene. Children often appear to develop normally during the first months of life before gradually losing previously acquired skills, particularly purposeful hand movements and spoken communication. This developmental regression is an important feature that distinguishes Rett syndrome from many other developmental conditions.

As the condition progresses, individuals may develop repetitive hand movements, impaired coordination, seizures, breathing abnormalities, sleep difficulties, scoliosis, muscle stiffness, and problems with feeding or swallowing. Although communication and motor abilities can become severely limited, many individuals retain important social and emotional abilities, including meaningful eye contact. The severity and combination of symptoms can vary considerably from one person to another.

There is currently no cure, but care has become increasingly comprehensive. Management may involve neurology, rehabilitation, physiotherapy, occupational and speech therapy, nutritional support, seizure management, respiratory monitoring, and cardiac assessment. Genetic confirmation can help establish the diagnosis and provide families with information about recurrence risk and available care. Early recognition of developmental regression is therefore an important step toward appropriate support.

في اليوم الوطني السعودي، نستحضر مسيرة المملكة العربية السعودية نحو مزيد من التقدم والابتكار، وما تشهده منظومة الرعاية ال...
23/09/2026

في اليوم الوطني السعودي، نستحضر مسيرة المملكة العربية السعودية نحو مزيد من التقدم والابتكار، وما تشهده منظومة الرعاية الصحية من تطور مستمر نحو مستقبل أكثر تكاملًا واستدامة.

وفي طيبا، نعتز بالعمل المشترك نحو تعزيز الوصول إلى الرعاية المتخصصة، ودعم المرضى وعائلاتهم ممن يعيشون مع الأمراض النادرة. ومن خلال التعاون وتبادل الخبرات العلمية وبناء شراكات فاعلة في قطاع الرعاية الصحية، نواصل التزامنا بالمساهمة في مستقبل تحظى فيه الأمراض النادرة بمزيد من الاهتمام والخبرة وإمكانية الوصول إلى الرعاية المناسبة.

كل عام والمملكة العربية السعودية وقيادتها وشعبها بخير وتقدم وازدهار.

Myotonic Dystrophy is an inherited neuromuscular disorder characterized by progressive muscle weakness and a distinctive...
15/09/2026

Myotonic Dystrophy is an inherited neuromuscular disorder characterized by progressive muscle weakness and a distinctive problem called myotonia, in which muscles have difficulty relaxing after contraction. The condition is caused by genetic changes that disrupt normal RNA processing within cells, affecting multiple tissues throughout the body rather than muscles alone.

There are two major forms: Type 1 (DM1) and Type 2 (DM2). Symptoms can include muscle weakness, stiffness, excessive daytime sleepiness, cataracts, swallowing difficulties, and abnormalities of the heart's electrical system. Some individuals also develop respiratory problems, gastrointestinal complications, or endocrine abnormalities. DM1 can range from congenital and childhood-onset disease to milder adult-onset forms.

Because myotonic dystrophy can affect several organ systems, care requires more than monitoring muscle strength. Regular cardiac assessments are particularly important, as abnormal heart rhythms can occur even when muscle symptoms appear relatively mild. Genetic testing can confirm the diagnosis and supports family counseling, while physiotherapy, respiratory care, cardiac monitoring, and symptom-specific treatment form important parts of long-term management.


( ) is a rare genetic disorder characterized by progressive muscle weakness and degeneration. It is caused by mutation...
07/09/2026

( ) is a rare genetic disorder characterized by progressive muscle weakness and degeneration. It is caused by mutations in the DMD gene, which provides instructions for producing dystrophin—a protein that helps protect muscle fibers from damage during contraction. Without sufficient dystrophin, muscle cells become increasingly vulnerable to injury and are gradually lost.

DMD primarily affects boys, although females carrying a disease-causing variant can occasionally experience symptoms. Early signs often appear in childhood and may include delayed motor milestones, difficulty running or climbing stairs, frequent falls, difficulty getting up from the floor, and enlarged calf muscles. Weakness progressively affects mobility and can eventually involve the respiratory muscles and heart, making cardiology and respiratory monitoring essential parts of long-term care.

There is currently no cure, but treatment has advanced considerably. Corticosteroids, physiotherapy, respiratory support, cardiac medications, and other disease-specific approaches can help preserve muscle function and manage complications. Genetic diagnosis is particularly valuable because it can confirm the condition, guide treatment decisions, identify affected relatives, and allow families to receive appropriate genetic counseling.


is the most common lysosomal storage disorder, caused by deficiency of the enzyme glucocerebrosidase (GCase). Without ...
02/08/2026

is the most common lysosomal storage disorder, caused by deficiency of the enzyme glucocerebrosidase (GCase). Without this enzyme, fatty substances called glucocerebrosides accumulate inside macrophages, leading to progressive enlargement and dysfunction of the spleen, liver, bone marrow, and, in some forms, the nervous system.

The disease is classified into three main types. Type 1 is the most common and does not involve the brain, while Types 2 and 3 include neurological manifestations that range from rapidly progressive infantile disease to more slowly progressive childhood-onset forms. Common symptoms include enlarged spleen and liver, anemia, thrombocytopenia, chronic fatigue, bone pain, fractures, and reduced bone density.

Today, enzyme replacement therapy (ERT) and substrate reduction therapy (SRT) have transformed the outlook for many patients with Gaucher disease, particularly when treatment begins early. Increased awareness helps shorten the diagnostic journey and allows patients to receive specialized multidisciplinary care before irreversible complications develop.

, also known as ( ), is a rare, inherited lysosomal storage disorder caused by deficiency of the enzyme iduronate-2-s...
08/07/2026

, also known as ( ), is a rare, inherited lysosomal storage disorder caused by deficiency of the enzyme iduronate-2-sulfatase (I2S). Without this enzyme, the body cannot break down specific complex sugars called glycosaminoglycans (GAGs), causing them to accumulate inside cells and progressively damage multiple organs.

Hunter syndrome primarily affects boys because it is inherited in an X-linked pattern. The disease can involve the skeleton, joints, heart, lungs, liver, hearing, and nervous system. Symptoms usually appear during early childhood and vary considerably, ranging from slowly progressive forms to severe disease with neurological involvement.


( ) is a rare inherited metabolic disorder in which the body is unable to properly break down the amino acid due to ...
28/06/2026

( ) is a rare inherited metabolic disorder in which the body is unable to properly break down the amino acid due to a deficiency of the enzyme phenylalanine hydroxylase (PAH). As phenylalanine accumulates in the bloodstream, it becomes toxic to the brain, potentially leading to irreversible neurological damage if left untreated.

PKU is usually identified through newborn screening, allowing treatment to begin before symptoms develop. Without early intervention, individuals may experience intellectual disability, developmental delays, seizures, behavioral problems, and difficulties with learning and concentration. Although PKU is a lifelong condition, early diagnosis has transformed outcomes, enabling many individuals to lead healthy and productive lives.

The cornerstone of PKU management is a lifelong low-phenylalanine diet, often supported by specialized medical formulas and, in some cases, targeted pharmacological therapies. Regular monitoring of blood phenylalanine levels is essential to maintain optimal metabolic control throughout childhood and adulthood. On International PKU Awareness Day, we recognize the importance of newborn screening, early diagnosis, and continuous multidisciplinary care in improving the lives of individuals living with PKU.

is a group of rare, inherited neurodegenerative disorders known collectively as Neuronal Ceroid Lipofuscinoses (NCLs)....
09/06/2026

is a group of rare, inherited neurodegenerative disorders known collectively as Neuronal Ceroid Lipofuscinoses (NCLs). These conditions occur when genetic mutations prevent cells from properly breaking down and recycling certain proteins and fats, leading to the accumulation of waste material inside cells, particularly in the brain and nervous system.

Symptoms often begin in childhood and may include progressive vision loss, seizures, cognitive decline, behavioral changes, and loss of motor skills. Because early symptoms can resemble more common neurological conditions, diagnosis is frequently delayed. As the disease progresses, affected individuals gradually lose the ability to communicate, move independently, and perform daily activities.

Although there is currently no cure for most forms of Batten disease, advances in genetic testing have improved diagnostic accuracy, and disease-specific treatments are available for certain subtypes. Early diagnosis allows families to access specialized care, supportive therapies, and genetic counseling that can help improve quality of life and care planning.

نتقدم لكم بأسمى آيات التهاني والتبريكات بمناسبة حلول عيد الأضحى المبارك، سائلين الله أن يعيده عليكم بالخير واليُمن والبر...
26/05/2026

نتقدم لكم بأسمى آيات التهاني والتبريكات بمناسبة حلول عيد الأضحى المبارك، سائلين الله أن يعيده عليكم بالخير واليُمن والبركات، وأن يديم عليكم الصحة والسعادة
✨ Eid Al-Adha Mubarak ✨

( ) is a rare genetic disorder caused by mutations in the NF2 gene, leading to the development of benign tumors, parti...
22/05/2026

( ) is a rare genetic disorder caused by mutations in the NF2 gene, leading to the development of benign tumors, particularly vestibular schwannomas affecting the auditory nerves.

Patients typically develop hearing loss, tinnitus, and balance disturbances, often in early adulthood. As tumors grow, they may compress surrounding structures, leading to neurological complications.

While there isn’t currently a cure for neurofibromatosis type 2, there have been multiple advances in diagnosing and treating NF2-related tumors. It’s very important that your NF2 care is treated by a multidisciplinary team with experience caring for individuals with NF2.

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