Hemophilia Society of Malaysia

The Hemophilia Society of Malaysia (HSM) Women's Wing gathered over the weekend for an enriching and empowering event aimed at fostering community and personal growth. Held at the Garden Kitchen @ Geo Residence, the gathering saw a diverse group of women coming together to celebrate their shared experiences and discuss pertinent issues.

The event kicked off with a warm welcome and introductions, setting the stage for a series of engaging activities and discussions. Participants had the opportunity to network, share insights, and gain inspiration from keynote speakers who highlighted themes of resilience, leadership, and empowerment.

Throughout the event, there was a strong sense of camaraderie and solidarity as attendees bonded over shared goals and aspirations. The gathering concluded with reflections on the day's learnings and renewed commitments to supporting each other both within the organization and in their personal endeavors.

Overall, the HSM Women's Wing weekend gathering was a resounding success, leaving participants inspired and motivated to continue their journey of personal and professional growth.

Selesai sudah Bengkel Fisioterapi Pengurusan Hemofilia Wilayah Borneo.

Semoga pengurusan hemofilia dapat terus ditambah baik serta kerjasama baik dapat diteruskan bersama-sama.

Penghidap Hemofilia memerlukan sistem sokongan yang padu untuk menjamin kualiti hidup, terutama berkaitan penjagaan sendi yang penting untuk pergerakan dan mobiliti dalam aktiviti seharian.

Dengan adanya pakar fisioterapi terlatih dalam pengurusan hemofilia, tentunya sistem kesihatan bertambah padu dan berkesan.

Setinggi-tinggi penghargaan kepada YBhg. Datuk Dr. Asits Sanna, ape Pengarah Kesihatan Negeri Sabah, JKN Sabah, Pegawai Fisioterapi, dan tentunya HSM Zon Sabah atas dedikasi dalam usaha menambah baik pengurusan hemofilia.

Bengkel tersebut hasil anjuran bersama Pertubuhan Hemofilia Malaysia dan Jawatankuasa Teknikal Fisioterapi Negeri Sabah, yang disokong oleh Persekutuan Hemofilia Sedunia World Federation of Hemophilia (WFH).

[ KENYATAAN MEDIA ]

17 Jun 2024 | Isnin

Selamat Hari Raya Aidil Adha! 🌙✨ Semoga semangat pengorbanan dan keikhlasan terus hidup dalam diri kita semua. Mari kita raikan hari penuh berkah ini dengan hati yang tulus dan penuh rasa syukur.

Happy Father’s Day 👨‍👧‍👦 to all amazing dads out there!
Today, we celebrate the 💪🏻 strong, loving 💕, and inspiring fathers who shape our lives - especially to children with 🩸 bleeding disorders. Thank you for your endless support, wisdom, and unconditional love. ❤️

𝑺𝒆𝒍𝒂𝒎𝒂𝒕 𝑯𝒂𝒓𝒊 𝑱𝒖𝒓𝒖𝒓𝒂𝒘𝒂𝒕 𝑺𝒆𝒅𝒖𝒏𝒊𝒂

You warm the hearts of many with your kindness & compassion. Happy International Nurses Day.

Our Nurses. Our Future.
The Economic Power of Care.

❤️ 𝐇𝐞𝐦𝐨𝐩𝐡𝐢𝐥𝐢𝐚 𝐒𝐨𝐜𝐢𝐞𝐭𝐲 𝐨𝐟 𝐌𝐚𝐥𝐚𝐲𝐬𝐢𝐚

It's not easy to raise a child, what more a child with bleeding disorders. From the bottom of our heart "Terima Kasih" to all the wonderful Mother, Mummy, Umi, and all women for your care, love and interest towards Us.
Happy Mother's Day

With ❤️ Hemophilia Society of Malaysia

Gracias for today!
Do visit our booth again tomorrow if you are at the World Federation of Hemophilia 's World Congress in Madrid to know more about us, the Hemophilia Society of Malaysia & also Kuala Lumpur 2026. Also freebies awaiting you 🤗

We are pleased to have Azfar and Amierul; our dedicated Secretary & Vice Secretary attend the Global NMO Training in conjunction with the WFH 2024 World Congress in Madrid.

The training is tailored for hemophilia PAG advocates to bolster advocacy management skills.

Hundreds of hemophilia patients and advocates from countries all over the world came together, forming a melting pot of ideas and progress.

We are pleased to have Azfar and Amierul; our dedicated Secretary & Vice Secretary attend the Global NMO Training in conjunction with the WFH 2024 World Congress in Madrid.

The training is tailored for hemophilia PAG advocates to bolster advicacy management skills.

Hundreds of hemophilia patients and advocates from countries all over the world came together, forming a melting pot of ideas and progress.

World Federation of Hemophilia

What an incredible lead-up to ! Participants of the Global National Members Organization Training (GNMOT) gather from across the globe for an enriching experience. 🌍🎓

Terima kasih ❤️ KEMENTERIAN KESIHATAN MALAYSIA atas keprihatinan kepada kami.
Selamat Hari Hemofilia Sedunia 🤗
Rawatan yang Saksama kepada Semua
Mengiktiraf Semua Masalah Pendarahan
EQUITABLE Access To All
Recognizing All Bleeding Disorders

🩸Hemofilia merupakan sejenis penyakit warisan yang sedia ada sejak seseorang itu dilahirkan dan ia tidak boleh berjangkit daripada seseorang. Penyakit ini berpunca daripada kekurangan faktor pembekuan darah.

Selamat Menyambut Hari Hemofilia Sedunia

On Hemophilia Day, sending strength & hope to all patients, doctors, parents and everyone related to hemophilia today and everyday. Lets raise awareness and support research for a brighter future

Aidilfitri berbahang gembira,
Disambut dengan rasa s**a,
Kami ucapkan Selamat Hari Raya,
Maaf Zahir dan Batin.

About 3 in every ten Malaysian adults had a mental disorder.
If things starting to get out of hands, reach out to experts, family members or trusted community members to figure things out together.

REMEMBER
YOU are NOT ALONE

Source: 2015 National Health and Morbidity Survey (NHMS)

Here are some ways to take care of your mental health:

💜 Talk to someone you trust
💛 Do some physical activity, like going for a walk
🧡 Do things you enjoy
💚 Give yourself time to rest
❤ Know that having a bad day does not make you a bad person!

: Various clotting factors collaborate in a series of chemical reactions to stop bleeding. Discover more about and how the WFH is striving for : https://bit.ly/3up6exA 🩸✨

Salam Nuzulul Qur'an

Berkhatan: Delima keluarga dan penghidap hemofilia.

"Muzakarah Jawatankuasa Fatwa Majlis Kebangsaan Bagi Hal Ehwal Agama Islam Malaysia Kali Ke-77 telah memutuskan bahawa berkhatan bagi Penghidap Hemofilia (dan masalah pendarahan lain) dianggap mengancam nyawa dan oleh itu ia tidak wajib ke atas mereka."

“Dan belanjalah pada jalan Allah, dan janganlah mencampakkan diri ke jalan kebinasaan, dan berbuat baiklah sesungguhnya Allah sangat s**a mereka yang melakukan kebaikan” ~ Al Baqarah: 195

Sumber: Clinical Practice Guidelines: Management of Haemophilia
Pautan untuk muat turun:https://www.hsm.org.my/upload/CPG-Management-of-Haemophilia.pdf

Calling for increased commitment and collaboration in haemophilia care

HSM yesterday attended a roundtable discussion to galvanise support across stakeholders to move the gaps closer for people living with bleeding disorders.

A joint-report was published by a committee comprising Healthcare Professionals and HSM in the discussion.

At the discussion, both HCP and HSM calls for serious consideration towards innovative treatments to address the low-hanging fruits in advancing the health system, health care and quality of life by integrating patient-lived experience.

The roundtable session was organised by Galen Centre, supported by Takeda Malaysia.

Cucuk Factor Batal Puasa ke tak?

TIDAK SAMA SEKALI! ☺️
Jangan lupa teruskan rawatan profilaksis ya semua. Jaga kesihatan agar kita dapat memanfaatkan keberkatan bulan Ramadan ini sebaiknya, InshaAllah.

Salam Eid Mubarak dan Selamat Berpuasa kepada semua umat Islam yang akan mula menjalani ibadah puasa. Panjatkan doa dan kesyukuran kepada Allah s.w.t. sempena bulan yang mulia ini.

Dalam menjalani ibadah puasa, saya kongsikan beberapa infografik tentang rawatan-rawatan yang tidak membatalkan puasa.

Sumber: KEMENTERIAN KESIHATAN MALAYSIA

Tahukah anda, sekitar 5 daripada 10 wanita pembawa genetik hemofilia turut mengalami gejala (simptom) masalah pendarahan?

Antara simptom yang dialami termasuklah

🩸Lebam (bruising)
🩸Hidung berdarah,
🩸Pendarahan haid yang banyak dan berpanjangan, dan lain-lain pendarahan yang berpanjangan.

Rujuk doktor/ pakar hematologi anda segera untuk mendapatkan pemeriksaan, maklumat lanjut serta mengawal situasi pendarahan anda.

Andalah tunjang masyarakat dan keluarga.

Selamat Hari Wanita Sedunia daripada Pertubuhan Hemofilia Malaysia (HSM)

One with our exco at the World Rare Disease Day 2024 Celebration at UKM Children Specialist Hospital (HPKK).

Come to our booth to play and learn more how you can help us improve treatment and care for the bleeding disorders community in Malaysia.

🌍💙 World Rare Disease Day 2024: Unite for change! Unite for equity! 💙🌍

Today, as we mark World Rare Disease Day, the Hemophilia Society of Malaysia stands in solidarity with millions around the globe to raise awareness and advocate for those living with rare diseases, including hemophilia.

COME, PLAY & WIN AT OUR INFORMATION & AWARENESS BOOTH TODAY AT THE LOBBY OF UKM SPECIALIST CHILDREN'S HOSPITAL, FAMOUSLY KNOWN AS HOSPITAL TUNKU AMPUAN BESAR TUANKU AISHAH ROHANI.

Hemophilia, a rare bleeding disorder, teaches us every day about the strength found in unity and the power of awareness.

🔵 **What We Do** 🔵
We are committed to providing support, education, and resources to individuals and families affected by hemophilia in Malaysia. Our mission is to ensure that every person living with this condition has access to the care and treatment they need to lead a full and healthy life.

🔵 **How You Can Help** 🔵
- **Spread the Word**: Share this post to increase awareness about hemophilia and rare diseases.
- **Educate Yourself and Others**: Learn more about hemophilia and other rare diseases. Understanding is the first step to support.
- **Donate**: Your donations help us continue our work in research, advocacy, and support services.

🔵 **Join Our Community** 🔵
If you or someone you know is living with hemophilia, you are not alone. Join the Hemophilia Society of Malaysia to connect with others who understand your journey and can share in your challenges and triumphs.

Together, we can make a difference. Today, let's renew our commitment to raise awareness, educate, and advocate for those affected by rare diseases. Because every individual deserves to lead a healthy and fulfilling life, regardless of the rarity of their condition.

👉 For more information on how you can get involved, visit our website or contact us directly.

Let's make World Rare Disease Day a beacon of hope and a call to action. Together, we are stronger. 💪💙

32% to 100% of women with von Willebrand disease endure heavy menstrual bleeding. On International Women’s Day, we're hosting a webinar titled "Women and Girls with and Reproductive Health." Join us as we delve into , exploring topics such as reproductive tract bleeding, pregnancy, and postpartum bleeding. Mark your calendars and learn more: https://bit.ly/3w3VsS7

Wishing everyone a prosperous Chinese New Year celebration.
Cheers to new beginnings and exciting progress ahead!