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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

taiba rare

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

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.

01/10/2025

Breast cancer is the most common cancer among women worldwide. Early detection through regular self-exams and mammography can significantly improve survival rates and treatment outcomes. Knowledge and proactive health checks are powerful tools in reducing risks.

This month, let’s stand together in solidarity, spread awareness, and encourage our communities to prioritize health. Support, awareness, and early detection save lives.

يُعتبر سرطان الثدي أكثر أنواع السرطان انتشارًا بين النساء، ولكن الكشف المبكر يزيد من فرص الشفاء بشكل كبير.
الفحص الذاتي المنتظم، والفحص السريري، وإجراء الماموغرام في المواعيد الموصى بها، جميعها خطوات أساسية للحفاظ على صحتك.

29/09/2025

Familial Hypercholesterolemia (FH) is an inherited genetic disorder that leads to dangerously high levels of LDL cholesterol from birth, significantly increasing the risk of premature cardiovascular disease. Homozygous FH (HoFH), a more severe form, can lead to heart disease in childhood if untreated.

Access to cholesterol-lowering treatments such as statins, PCSK9 inhibitors, and apheresis., besides Identifying FH early can save lives by preventing heart attacks and strokes in young individuals.

23/09/2025

في اليوم الوطني السعودي 🇸🇦 الـ95 نحتفل بمسيرة المملكة العربية السعودية في الوحدة والنمو والابتكار. نفخر بأن نكون جزءاً من مسيرة المملكة في تطوير الرعاية الصحية وتعزيز الأمل لمجتمع الأمراض النادرة

On this 95th Saudi National Day, we celebrate the Kingdom’s journey of unity, growth, and innovation. We are proud to stand with Saudi Arabia in advancing healthcare and fostering hope for rare disease communities.
#السعودية #التنمية #الصحة #الأمل #المجتمع

17/09/2025

Leigh Syndrome is a rare, progressive neurodegenerative disorder that usually emerges in infancy or early childhood. It is linked to defects in mitochondrial function, leading to motor and cognitive impairment, breathing difficulties, and developmental delays.
Leigh syndrome is caused by an inherited mutation in mitochondrial DNA or nuclear DNA. Most individuals with the disorder have a mutation in nuclear DNA; only 10-20% have a mutation in mitochondrial DNA.

There is currently no cure, but supportive care and ongoing mitochondrial research are offering hope for affected families.

Awareness days like this are crucial for supporting ongoing research funding, patient advocacy, and improving the diagnostic journey for families.

10/09/2025

Reye’s Syndrome is a very rare but serious condition that primarily affects children and teenagers, causing sudden swelling in the brain and liver. It is strongly linked to aspirin use during viral infections like influenza or chickenpox. Symptoms include persistent vomiting, confusion, seizures, and loss of consciousness, making it a medical emergency.

Although cases are rare today due to awareness campaigns about aspirin use in children, ongoing education remains important.

Raising awareness this month reminds caregivers and healthcare providers to remain vigilant about safe medication practices.

08/09/2025

Duchenne Muscular Dystrophy (DMD) is a rare genetic disorder affecting approximately 1 in every 3,500–5,000 boys worldwide. It causes progressive muscle weakness due to mutations in the dystrophin gene. Symptoms often appear early in childhood, with loss of mobility usually occurring in adolescence.

World Duchenne Awareness Day focuses on the urgent need for diagnosis, access to care, physiotherapy, assistive devices, and emerging genetic therapies. Advocacy and community engagement are crucial to ensuring families receive support and treatment options.

This day also highlights the role of scientific advancements and global collaboration in shaping the future of care for DMD patients.

01/09/2025

(SCD) is a group of inherited red blood cell disorders. Red blood cells contain hemoglobin, a protein that carries oxygen. Healthy red blood cells are round, and they move through small blood vessels to carry oxygen to all parts of the body.

In someone who has , the hemoglobin is abnormal, which causes the red cells to become hard and sticky and look like a C-shaped farm tool called a sickle. The cells die early, which causes a constant shortage of red blood cells. Also, when they travel through small blood vessels, sickle cells get stuck and clog the blood flow. This can cause pain and other serious complications (health problems) such as infection, acute chest syndrome, and stroke.

There are several types of SCD. The specific type of SCD a person has depends on the they inherited from their parents. People with SCD inherit genes that contain instructions, or code, for abnormal .

September marks Sickle Cell Awareness Month, and so we emphasize the importance of equitable healthcare access and ongoing research to improve quality of life.

25/08/2025

SATB2-Associated Syndrome ( ) is a rare genetic condition linked to mutations in the SATB2 gene. Individuals with SATB2-associated syndrome typically have mild to severe intellectual disability, and their ability to speak is delayed or absent. Development of motor skills, such as rolling over, sitting, and walking, can also be delayed.

SATB2-associated syndrome is not typically inherited. It results from new (de novo) changes in the gene that occur during the formation of reproductive cells or in early embryonic development. Affected individuals have no history of the disorder in their family.

By spreading awareness of SAS, we contribute to better recognition, research funding, and supportive care systems for affected individuals.

19/08/2025

Malan Syndrome is a rare genetic disorder characterized by overgrowth, intellectual disability, and distinctive facial features. It is caused by mutations in the NFIX gene and often goes undiagnosed due to its rarity and overlapping symptoms with other conditions.

Children with Malan Syndrome may exhibit tall stature, anxiety, seizures, and visual impairment. While there is no cure, therapies such as behavioral support, physical therapy, and educational assistance can greatly improve quality of life.

Malan Syndrome Awareness Day helps increase understanding, promote early recognition, and support families through advocacy and research.

17/08/2025

Ehlers-Danlos Syndromes ( ) are a group of inherited connective tissue disorders affecting collagen structure and function. Symptoms often include joint hypermobility, skin that is soft and stretchy, and tissue fragility. EDS can range from mild to life-threatening forms like vascular EDS.

Different types of Ehlers-Danlos syndrome are associated with a variety of genetic causes, some of which are inherited and passed on from parent to child.

Due to its variable presentation, EDS is frequently misdiagnosed or overlooked. Patients often experience chronic pain, frequent dislocations, and delayed wound healing. Diagnosis typically relies on clinical examination, family history, and sometimes genetic testing.

Raising awareness about EDS can shorten diagnostic journeys and lead to better pain management, physical therapy, and access to multidisciplinary care.

14/08/2025

August is dedicated to raising awareness of autoinflammatory diseases—conditions caused by innate immune system dysfunction that lead to spontaneous inflammation without external triggers. Examples include Familial Mediterranean Fever ( ), TRAPS, and CAPS syndromes.

Unlike autoimmune disorders, autoinflammatory conditions are not driven by antibodies but by overactive immune responses due to genetic mutations. Symptoms often include recurrent fever, rash, joint pain, and fatigue. Early diagnosis is critical to avoid long-term organ damage, and biologic treatments targeting IL-1 or TNF pathways have proven effective.

By shining a light on these misunderstood conditions, we support patients in obtaining accurate diagnoses and better quality of life.

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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