Narrow Results

Biotech Crops Catch On in Brazil.

China Biologic Products Appoints New Directors.

Pfizer Research Unit Moves to China.

First China to Acquire Shenzhen Ming He Tang.

Novartis to Recover Growth in China.

India Enthusiastic to Export Pharmas to China.

Indian Pharma Wants Nigeria to Abolish Drug Inspection.

Innovative Approach to Rare Disease Research by Max Neeman.

SG Biofuels Expands into India.

Karo Bio & Zydus Extend Research Collaboration.

QPS Acquires Qualitix.

AUSTRALASIA – Mighty River Honey: Saving the Bee Through Social Enterprise

SINGAPORE – A*STAR’S IME AND INEX Innovations Exchange to Develop Non-invasive Prenatal Diagnostic Technology

SINGAPORE – CellResearch Corporation receives new US patent approval for exclusive stem cell technology amidst new partnerships

SINGAPORE – A Gel That Can Make Drugs Last Longer

JAPAN – Japanese Biotech JCR Pharmaceuticals Selects Medidata’s Cloud-Based Platform to Power Rare Disease Clinical Research in Japan

PARIS – MedDay Reports Additional Positive Data of its Pivotal Phase III Study With MD1003 in Patients with Progressive Multiple Sclerosis

GERMANY – Merck Serono Introduces New Eeva Test Version Aiming for Optimized Assisted Reproductive Outcomes

AFRICA – Ebola Genome Insights Indicate that Containment Worked

UNITED STATES – TissueGene, Inc. Announces FDA Acceptance Of Invossa™ As Proprietary Name For TissueGene-C

UNITED STATES – FDA Approves Technology Upgrade for Recipients of First Commercially Available Cochlear Implant

Innovations driving the Indian dental consumables market.

A breath of hope.

Cybersecurity tips to prevent healthcare organizations from having to swallow a bitter pill.

Nutritional solutions to reduce harmful impact of air pollution on cardiovascular health.

Rare diseases are a group of chronic and complex genetic disorders characterized by low prevalence rate. About half of new cases present at birth and affect children with severe disabilities. There has been scant research studying the stress and problems of the parents of children with a rare disease. In Hong Kong, the government has no established policy for rare disease management. The special needs of people with a rare disease are undermined in the current healthcare and social welfare systems. A descriptive qualitative research approach was conducted to investigate the experience of the parents. Sixteen parents were recruited, and in-depth semi-structured interviews were conducted. Thematic analysis was performed with the Supportive Care Need Framework. Major stress encountered by the families was identified, i.e., delay in diagnosis, lack of professional support, financial stress of paying for expensive drugs, and medical expenses. Also, family relationship problems, psychological impact, depression, and suicidal thoughts were pervasive among the parents. This study demonstrates that rare diseases bring enormous stress to families. Early intervention of healthcare professional and social workers is essential in empowering these families. The Hong Kong SAR government has the responsibility to take an active stance: to establish a clear definition of rare diseases and establish a policy in rare disease management.

Ataxia telangiectasia (AT) is a rare neurodegenerative condition with a prevalence of 1 in 40,000 to 1 in 300,000 worldwide. It involves a genetic mutation of chromosome 11q.26. The condition is inherited in an autosomal recessive manner causing atrophy of the cerebellum due to loss of Purkinje fibres. AT presents early in childhood and the clinical features depend on the type of mutation. The study is a case report of a rare genetic disorder of a 9-year-old female who came to the physiotherapy clinic with a diagnosis of AT. The patient was presented with progressively worsening gait problems with frequent falls, with complete dependence on assistance and impaired balance and coordination. The treatment program was 12 months divided into an intense physiotherapy program for two months followed by 10 months of two times per week of physiotherapy sessions. The program was divided into four elements which are: (1) Lifestyle changes, (2) Strengthening exercises, (3) Coordination exercises, and (4) Balance training exercises. The result showed a positive outcome in increasing the patient’s independence, increased muscle strength, reduced ataxia symptoms intensity, and the patient can carry out complex activities with the help of accessory orthosis devices.