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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.

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.

07/08/2025

Klippel-Feil Syndrome ( ) is a rare congenital condition where two or more cervical vertebrae are fused, often resulting in a short neck, restricted mobility, and a low hairline. While these are the most visible signs, KFS can also involve hearing loss, scoliosis, and heart or kidney abnormalities.

The condition is often detected through imaging and may be linked to mutations in the GDF6, GDF3, or MEOX1 genes. Treatment typically involves physical therapy and, in severe cases, corrective surgery to manage spinal instability or neurological symptoms.

On Klippel-Feil Syndrome Awareness Day, we spotlight this underdiagnosed condition to encourage earlier recognition and comprehensive care for patients navigating its lifelong impacts.

04/08/2025

Spinal Muscular Atrophy ( ) is a genetic disorder characterized by the loss of motor neurons in the spinal cord, leading to progressive muscle weakness and atrophy. It is caused by mutations in the gene and is one of the leading genetic causes of infant mortality.

Recent therapeutic advances have given hope to families and patients by compensating for the deficiency in survival motor neuron (SMN) protein via or other genetic manipulation. However, it is now apparent that none of these therapies will cure SMA alone.

Raising awareness during helps drive research, encourage newborn screening policies, and support affected families.

03/08/2025

CLOVES Syndrome is a rare and complex disorder caused by a somatic mutation in the PIK3CA gene. It affects various body systems and presents with congenital lipomatous overgrowth, vascular malformations, epidermal nevi, and spinal/skeletal anomalies. The condition is part of the PIK3CA-Related Overgrowth Spectrum ( ), a group of disorders linked by similar gene mutations.

Managing CLOVES Syndrome requires a multidisciplinary approach including vascular specialists, orthopedic surgeons, dermatologists, and geneticists. Though there is currently no cure, targeted therapies such as PI3K inhibitors are under investigation and offer promise. Supportive care and monitoring of complications like thrombosis or spinal compression are crucial.

By raising awareness on , we can promote earlier diagnosis, better care coordination, and continued research efforts for this underrecognized disorder.

31/07/2025

is a rare and complex form of epilepsy that begins in infancy and evolves over time.

22/07/2025

Syndrome is the most common inherited cause of intellectual disability and a leading known cause of . Marked on July 22, promotes education and understanding of this disorder, which results from a mutation in the FMR1 gene located on the X chromosome.

Symptoms vary widely, from learning disabilities and developmental delays to social anxiety, behavioral issues, and physical characteristics like elongated faces or flexible joints. Fragile X affects both males and females, though males often experience more severe symptoms. It is diagnosed through a simple genetic blood test and can be confirmed early in life.

While there's no cure, early intervention through therapies and supportive care can dramatically improve quality of life. Let’s raise awareness to ensure families receive the right resources and reduce diagnostic delays.

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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