Managing Rare Diseases Through A Multidisciplinary Approach

Does the term "Neurofibromatosis Type 1" (NF1) bring back any memories? Although NF1 is regarded as a rare disease, more Malaysians than we realise are afflicted. NF1 is an autosomal dominant genetic condition that has a 50:50 chance of being passed down from one's parents or developing due to a spontaneous mutation in the NF1 gene. The multisystem disorder NF1 is characterised by the growth of tumours on nerve tissue, changes in skin pigmentation, and other potential side effects that may affect different bodily systems. 

Children can develop the disease at a young age, with NF1 being diagnosed in 1 in 3,000 children worldwide, according to estimates. It can be difficult for parents to recognise the beginning of the disease in their child because the early symptoms can include light-brown spots (café au lait macules) on the skin or bumps developed either on or under the skin (neurofibromas), with a risk of developing optic glioma later in life. 

Plexiform neurofibromas (PNs), the majority of which are present at birth, may be experienced by 30%–50% of NF1 patients. PNs can severely impair growth and function and cause severe disfigurement. Because other symptoms of NF1 include tumours that develop on the nerves, causing visible bumps that may attract unwanted attention in public, patients often also experience a significant psychosocial burden. 

Puan Nadiah Sharing her thoughts about the importance of having awareness

Due to the significance of the topic, a group of experts including Professor Dr. Thong Meow Keong, Consultant Clinical Geneticist, Department of Paediatrics, University of Malaya Medical Centre, Dr. Ngu Lock Hock, Head of Department, Department of Genetics, Hospital Kuala Lumpur, Azrul Mohd Khalib, Founder and Chief Executive Officer of the Galen Centre for Health and Social Policy, and Puan Nadiah Hanim binti Abdul Latif, President of Malaysian Rare 

"Removing barriers to awareness is an essential step to improving understanding of NF1 not just with the public but also among healthcare practitioners," said Dr. Ngu Lock Hock, Head of Department, Department of Genetics, Hospital Kuala Lumpur. Ideally, we can accomplish this by incorporating information about rare diseases into medical curricula and raising awareness through social media. In the field of rare diseases, collaboration with patient support organisations is essential for launching funding and policy changes.

Visit www.learnNf1.my!

"NF1 is a disease that requires input from various medical teams, including neurologists, geneticists, hemato-oncologists, surgeons, and other experts from various disciplines," said Professor Dr. Thong Meow Keong, Consultant Clinical Geneticist, Department of Paediatrics, University Malaya Medical Centre, in a speech at the event. Because of this, managing NF1 through a multidisciplinary approach is a necessary step forward.

Azrul Mohd Khalib, the founder and CEO of the Galen Centre for Health and Social Policy, endorsed the call for policy change and believed that in order to improve patient health, policy changes that encourage an ecosystem approach to managing rare diseases and gaining access to treatment are required. 

How does your doctor know you have NF-1?

Find out symptoms on verifying NF-1

Rare diseases frequently go unnoticed, which results in a lack of crucial information in the public domain for the patient to cope, according to Puan Nadiah Hanim binti Abdul Latif, President of the Malaysian Rare Disorders Society (MRDS). Patients require precise instructions from the appropriate parties who can help them manage their disease. Our motivation for raising awareness of NF1 stems from our desire to assist people in learning about the condition, seeking a diagnosis, and ultimately receiving treatment. 

At the forum, a new microsite with the title Let's Now Figure 1 was unveiled in an effort to raise public awareness of NF1. The new microsite, which is sponsored by AstraZeneca, acts as a resource centre, providing details on NF1's symptoms, diagnostic techniques, and management strategies. 

The website www.learnNf1.my offers information for patients who have just been diagnosed as well as parents of children with NF1 about potential healthcare teams to contact as well as the (patient's) treatment plan. 

Prudence Foundation, IFRC and Cartoon Network team up to launch 'SAFE STEPS Kids Climate Change'

The latest thematic series of the SAFE STEPS Kids programme, SAFE STEPS Kids Climate Change, has been introduced by Prudence Foundation, the community investment arm of Prudential plc. The new series aims to educate kids about climate change and easy steps they can take to make the planet healthier and safer by using well-known cartoon characters like We Bare Bears and Gumball. The Malaysian Red Crescent (MRC) will roll out the programme in Malaysia. It was created in collaboration with the International Federation of Red Cross and Red Crescent Societies (IFRC) and Warner Bros. Discovery's Cartoon Network.

The series was officially launched in Kuala Lumpur, Malaysia by Yang Berhormat (YB) Tuan Nik Nazmi bin Nik Ahmad, Minister of Natural Resources, Environment and Climate Change and Marc Fancy, Executive Director of Prudence Foundation.

Climate change is an existential issue for both the present and future generations, according to YB Tuan Nik Nazmi, who spoke at the launch event. In order to address its effects, the world will need the enthusiasm and energy of the young. We are happy to announce this joint initiative that will inform and equip our youth to address and address this global challenge by incorporating easy but effective actions into their daily lives.

The goal of the Prudence Foundation is to improve the lives of disadvantaged groups in Prudential's markets in Asia and Africa by enhancing their safety and risk tolerance. The Foundation's primary area of focus is climate adaptation, where programmes are created to shield families, communities, and economies from the effects of climate change.

"Climate change affects all facets of society, particularly the most vulnerable groups and children," said Marc Fancy. In order to help children develop a sense of responsibility and an understanding of the world around them, as well as how climate change will affect them throughout their lives, we believe that teaching children about our climate and protecting our environment from a young age is extremely important.

"Cartoons are a powerful tool for expressing empathy and comprehension. While they are amusing to watch, they also have a significant impact on children's opinions, habits, and influences. We hope to be able to educate and empower the younger generation through the SAFE STEPS Kids programme so they can make significant contributions to the fight against climate change.

Through Cartoon Network in Asia, SAFE STEPS Kids reaches more than 20 million homes every day. Prior themes have included first aid, health, road safety, and natural disasters since the campaign's launch in 2019. 

Visit https://www.safestepskids.com/ for more details. 

COOLBLOG Celebrates 18 years with a flagship store in Pavilion KL

Since its founding in 2005, Coolblog, a proud Malaysian homegrown brand and the nation's first chain of Halal kiosk-based pearl milk tea shops, has delighted customers with its reasonably priced and delectable drinks while fostering franchise expansion. Launching its flagship store in Pavilion KL coincides with Coolblog's 18th anniversary and represents a significant turning point in the company's expansion and relentless product innovation journey. 

Coolblog's commitment, as reaffirmed by Tunku Ali Redhauddin, Chairman of Coolblog Malaysia, goes beyond providing exceptional desserts; it also includes encouraging the entrepreneurial spirit through franchising. The success of hundreds of franchise locations across the country demonstrates Coolblog's commitment to giving aspiring entrepreneurs the tools they need to succeed as part of the Coolblog family. The expansion of Coolblog has been greatly aided by this sizable network of franchise partners.

A rich milk tea blend with premium brown sugar syrup, black pearls, and caramelised cheese mousse is now available exclusively at Coolblog Pavilion KL as part of their grand opening celebration. The Creme Brûlée Cheese Milk Tea, which is only offered at Coolblog Pavilion KL, promises milk tea lovers an unforgettable flavour. Along with these perennial favourites, the flagship store will have a special menu with a tempting array of hot beverages and premium waffles. With these store-only selections, Coolblog hopes to serve a wider range of tastes and give its devoted customers an improved dessert experience.

By the end of 2023, Coolblog, a well-known name in Malaysia's beverage industry, plans to open another 20 new locations. Despite the rising cost of living, Coolblog is steadfast in its dedication to providing delicious desserts starting at just RM 4.90. Every drink and dessert enthusiast deserves an extraordinary experience, and timeless classics like Chocolate Ice Blended, Honeydew Smoothies, and Strawberry Cheese Smoothies continue to be all-time favourites.

Sueli Lew, CEO of Coolblog Malaysia concluded, "This flagship store opening is a celebration of Coolblog’s 18-year journey – from its first store in Sutera Mall at Johor to nearly 330 outlets nationwide. Like a trusted member of the family, Coolblog has been delighting the taste buds of both young and old, serving generations of Malaysians. With our expansion plans and a growing network of franchise partners, we are thrilled to continue our ambitious journey by bringing the Coolblog experience to more Malaysians, ensuring that every customer can savour Coolblog's delectable treats wherever they are."

Dessert lovers are invited to take a tantalising journey of flavours at Coolblog's flagship location in Pavilion KL, which is located at Lot C5.06. It is open daily from 10:00 am to 10:00 pm. In order to heighten the excitement surrounding the launch, Coolblog is also providing customers with a brief "Buy 1 Free 1" opening promotion starting on October 2, 2023, at 1 PM, and lasting through October 4, 2023.

Do visit Coolblog's official website at www.coolblog.com.my for more details on its most recent updates or promotions, or follow them on Instagram (@coolblogmalaysia) and Facebook (@coolblog.my).

Showcase SDSI Sarawak Region | Boost promotion for local entrepreneurs

The Ministry of Entrepreneurship and Cooperative Development (KUSKOP) has launched the Showcase One District One Industry (SDSI) Sarawak Region 2023 initiative to build a diverse entrepreneurial ecosystem that includes local business owners. Additionally, it offers a platform for commercialization through the display and sale of goods bearing a district's logo.

As the nation's economy now enters a phase of recovery, KUSKOP is dedicated to maintaining this programme as a catalyst for enhancing the perception of SDSI's goods and services. A sales exhibition, entrepreneur classes, and a Halal Certification Workshop are just a few of the day's events.

SDSI Sarawak offers a variety of incentives to entrepreneurs in the interim, as well as displays of goods bought and sold locally. Entrepreneurs who attend can consult with seasoned industry players and receive funding for halal certification.

Visitors can take part in raffles and watch performances by Sarawak cultural groups. Through the Sarawak Ministry of International Trade, Industry and Investment (MINTRED), which is expected to act as a catalyst to improve the image of SDSI's products and services in addition to bringing awareness that SDSI's products have potential and quality, the State Government also strategically collaborates with the organisation of the SDSI Showcase 2023 Sarawak.

The SDSI products in question include handicraft items, sponge sugar products, honey-based beauty products, and Sarawak layer cakes. The second venue after the first, which was held at the Middle Zone Stage at Dataran Merdeka in Kuala Lumpur from July 7 to 9, is Showcase SDSI 2023 Sarawak.

The Melaka International Trade Centre (MITC), Ayer Keroh, Melaka, will host the SDSI 2023 Showcase at the National level from October 6–8, 2023. The following will take place in Sabah Regional Level and North Zone in Perak in November and December of 2023, respectively. The SDSI Sarawak level will be open to the public from September 29 to October 1 from 10 am to 10 pm at Plaza Merdeka in Kuching, Sarawak.

BZU BZU is coming to TCE Baby Expo at MITEC! 22-24 September 2023

Special deals happening at TCE Baby Expo!

Exclusive deals of up to 20% discount on BZU BZU products

Free Skincare Cotton Towel 80’s (Value Pack) worth RM21.90 with a minimum spend of RM120

The TCE Baby Expo will be held at MITEC from 22-24 September, 2023 and im excited to announce that BZU BZU will be participating in Hall 3 with a Main Booth for all of their products and a Special Little Lady Booth for their Little Lady line.

If youre a natural fan of Bzu Bzu, this is the time to mark your calendars as with a minimum spend of RM120 and above on any BZU BZU products in a single receipt, you will be entitled to enjoy exclusive deals of up to 20% discount on BZU BZU products, bundle deals, as well as receiving free Skincare Cotton Towel 80's (Value Pack) worth RM21.90.

On top of these amazing deals, customers also stand a chance to participate in the Sure-Win Lucky Spin at the Little Lady booth with a minimum purchase of 1 set of BZU BZU Little Lady range in a single receipt and win exciting prizes such as BZU BZU Silky Soft Kids Shampoo (600ml), BZU BZU Silky Soft Hair Treatment (600ml), BZU BZU Ultra Gentle Baby Wipes, and its limited edition merchandise such as Little Lady Mermaid Enamel Pin and Little Lady Mermaid Cushion.

The Little Lady skincare range, consisting of the Facial Cleansing Mousse, Facial Cream and Body Lotion, are specially formulated for girls aged 4 and above. Serving as a solution to all skincare needs and aiming to impart healthy skincare habits from young, BZU BZU Little Lady skincare range empowers every little girl to grow and glow as she takes that next step forward.

BZU BZU TCE Baby Expo at MITEC Information

Date : 22 to 24 September 2023
Time : 10.00 a.m. - 8.00 p.m.
Location : Little Lady Booths: Booth 254, 254A
Main BZU BZU Booths: Booth 258, 259, 275 and 276 Hall 3, MITEC Complex @ KL Metropolis,
8, Jalan Dutamas 2, Segambut, 50480 Kuala Lumpur, Wilayah Persekutuan Kuala Lumpur.

Look forward to these deals while you're there!

● Enjoy discounts of up to 20% on BZU BZU products.
● BZU BZU Bundle Deals.
● Stand a chance of winning amazing prizes on the Sure-Win Lucky Spin with a minimum purchase of 1 set of BZU BZU Little Lady range in a single receipt.
● Gift With Purchase: Get a free Skincare Cotton Towel 80’s (Value Pack) worth RM21.90 with a minimum spend of RM120 and above on BZU BZU products in a single receipt.