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taiba rare

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

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.

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.

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.

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.

09/11/2025

( ) is a rare genetic lipid disorder where the body cannot properly break down fats due to a deficiency in the enzyme. This leads to extremely high levels, causing abdominal pain, fatigue, and the risk of .

Chylomicronemia syndrome results from a disorder where the enzyme lipoprotein lipase ( ) is absent or defective, or due to the lack of apolipoprotein C-II ( ), which activates LpL. LpL, found in fat and muscle, breaks down specific lipids. Without it, chylomicrons accumulate in the blood, leading to chylomicronemia.

Dietary management, including avoiding fats and refined sugars, is critical for preventing complications. In recent years, innovative -basedtherapies and enzyme-targeted treatments have offered new hope for patients.

04/11/2025

is a severe form of childhood-onset characterized by multiple seizure types and cognitive impairment. It often begins between ages 3 and 5, and its management remains challenging due to resistance to standard therapies.

Early diagnosis of is vital, as it enables tailored care involving , dietary therapy like , and supportive therapies that improve daily functioning. Families and caregivers play a crucial role in navigating the complex journey of living with LGS.

No cause can be found in 30 to 35 percent of individuals and Lennox-Gastaut syndrome can be very difficult to treat. A combination of seizure medications and other treatments may be used to improve control and other associated conditions.

02/11/2025

is a rare hormonal disorder that occurs when the produces excess growth hormone, often due to a benign tumor. This excess leads to enlarged hands, feet, and facial features, but its gradual onset can make early detection difficult. Recognizing subtle changes in appearance, fatigue, or joint pain is essential for early intervention.

If left untreated, can cause complications such as , , , and even heart disease. Timely diagnosis through testing and MRI scans can make a major difference in management and outcomes.

This day serves as a reminder of the importance of and regular check-ups. Raising awareness among healthcare providers and the public can lead to earlier detection and improved quality of life for those affected.

28/10/2025

L*Ds represent a group of over 70 inherited metabolic diseases caused by enzyme deficiencies that prevent the breakdown of certain molecules. As a result, toxic substances accumulate in cells, damaging organs like the liver, heart, brain, and bones.

Conditions such as Gaucher, Pompe, and Fabry disease fall under this group. For some, enzyme replacement therapy exists, but for many, treatment remains supportive. Patients often face lifelong health challenges and require multidisciplinary care.

Awareness helps advance new research, patient support initiatives, and equitable access to treatments. Each step forward brings hope to families affected by these devastating conditions.
*D

23/10/2025

Mastocytosis and mast cell activation diseases are rare disorders caused by the overproduction or abnormal activation of mast cells, leading to symptoms such as severe allergic reactions, skin lesions, gastrointestinal issues, and fatigue.

These conditions are complex, often resulting in diagnostic delays and difficulty managing symptoms due to their wide variability. For some patients, reactions can be life-threatening, requiring constant vigilance and emergency planning.

Awareness fosters better recognition by healthcare providers, supports patient advocacy, and encourages investment in research to improve treatments and quality of life for those affected.

20/10/2025

Down Syndrome, caused by an extra copy of chromosome 21, is the most common chromosomal condition worldwide. It leads to varying levels of intellectual disability, characteristic physical traits, and an increased risk of medical conditions such as congenital heart disease, thyroid issues, and early-onset Alzheimer’s disease.

Importantly, early interventions, inclusive education, and access to healthcare allow individuals with Down Syndrome to thrive. Many go on to lead independent lives, pursue education, and participate meaningfully in their communities. The condition does not define their potential; rather, with proper support, their capabilities shine.

19/10/2025

Today, we raise awareness for , a group of rare, inherited metabolic disorders that affect the body’s ability to break down and transport lipids. This leads to the accumulation of harmful amounts of fat in vital organs such as the liver, spleen, lungs, and brain — causing progressive and often life-threatening complications.

There are several types of Niemann-Pick Disease (A, B, and C), each varying in severity and symptoms. Type C, for example, often affects the nervous system and can lead to movement disorders, cognitive decline, and difficulty swallowing or speaking. Early diagnosis and supportive care can significantly improve quality of life for affected individuals and their families.

On this day, we stand in solidarity with the global rare disease community — advocating for research, awareness, and compassion for every patient and family touched by Niemann-Pick. Together, we move closer to understanding, treating, and one day curing this rare condition.

02/10/2025

disease is a group of inherited lysosomal storage disorders where harmful lipids accumulate in cells, especially in the spleen, liver, lungs, bone marrow, and brain. This build-up causes progressive organ dysfunction and neurological decline, leading to a wide range of symptoms such as developmental delays, difficulty walking or swallowing, seizures, and respiratory complications.

There are several types of Niemann-Pick, including Type A, B, and C, each with varying severity. Type A often presents in infancy with rapid progression, while Type C is sometimes called “childhood Alzheimer’s” due to its profound impact on cognition. Despite being rare, families often endure long diagnostic journeys, as symptoms can mimic more common diseases.

Awareness is critical because ongoing research into gene therapy and substrate reduction therapy offers hope for patients. Greater recognition ensures better access to clinical trials, earlier diagnosis, and comprehensive care for affected families.

Address

Dubai

Opening Hours

Monday	08:00 - 17:00
Tuesday	08:00 - 17:00
Wednesday	08:00 - 17:00
Thursday	08:00 - 17:00
Sunday	08:00 - 17:00

Website

https://taibarare.com/

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