Raised of MYR 100,000.00 target.
“Sorry, we don’t have money to buy the drug that can save your baby”.
“There’s a drug that can save your child, but it’s not available in our country”.
“The doctor wasn’t aware of the rare disease, hence the delay in your child's diagnosis.”
“Your child needs to be on the waiting list till we have the funds / drugs to treat”.
“We have limited expertise in the country to save your child”.
One day, one of you may hear one of these. Are you ready to face it?
None of us was, when it hit us. Some, unfortunately, lost their loved ones. But, most of us are battling it through.
Rare Diseases: The Reality
An estimated 300 million people around the world are living with a fate they simply can’t change. 75% of them are children. Of which, 30% of them will die before they’re 5 years old, with no chance of experiencing school life, friendship with peers or live any semblance of normality that most of us have taken for granted.
Out of over 7000 Rare Diseases known, no cure exists. Less than 10% of these diseases come with a chance of treatment to manage conditions, but they come with critical problems too: treatments are not easily available in many countries and they are prohibitively expensive.
The lack of awareness on Rare Diseases is apparent. Many would only hear of it when they have a child who’s diagnosed with this condition, which is often too late. Delayed diagnosis and inaccessibility to timely treatment further exacerbate the issue, causing damage to quality of life. In some cases, even the life of the child may be at stake.
It’s about time that Rare Diseases got the attention and awareness it deserves, among the public and especially among medical professionals and policymakers.
For decades, parents of children with Rare Diseases, NGOs and various support groups have been championing this cause tirelessly by highlighting its many challenges and seeking support for their needs. Considering the truth that Rare Diseases are here to stay, the least they could expect is some support and compassion.
Steps to Bring Real Change
Share real stories that make positive impacts. Children / people with Rare Diseases demonstrate courage and an incredible will to survive. Despite their challenges, they are progressing, being successful and more importantly, making widespread impact. A positive take on children and people living with Rare Disease to be highlighted instead of usual "sob-stories". These are not victims who need sympathy, they are unsung heroes who could use your support and understanding. Positive stories will inspire confidence and hope not only in the public and policymakers, but also in many Rare Parents out there. It must be understood that efforts and resources spent on a child with Rare Disease is well-deserved, worthwhile and beneficial to the community and nation.
Here’s some example:
Manusia Kuat & Wajah RD Malaysia (Hari Penyakit Jarang Jumpa Malaysia 2022)
Beauty queens raise awareness of such disorders through art event at PJ mall
Neurofibromatosis sufferer refuses to let his condition deter him from living life to the fullest
Inform and engage the newly elected government officials and Member of Parliaments on the National Rare Disease Framework, as this program will not only benefit current, but also future generations of children with Rare Diseases. Many Members of Parliament will be informed about the National Rare Disease Framework. These are individuals who can drive even more support, influence change at a greater level and can serve as voices of change to improve the future of the Rare Disease community.
Ucaptama Perhimpunan Keluarga & Persidangan Penyakit Jarang Jumpa Malaysia 2022
Provide a platform to the public and corporations seeking to help the Rare Disease community. Funds will go a long way to help the purchase of life saving drugs / treatments, provide financial assistance to rare families especially those within the B40 group, and also to drive advocacy projects / activities that can further elevate awareness of these diseases. Increased funding to cater to the immediate needs of the Rare Diseases community. This may lead to more deliberations, suggestions and actions for sustainable long-term solutions.
Your collective kind contributions will be distributed among these rare disease champions :-
Ministry of Health - Tabung Amanah Penyakit Jarang Jumpa
Persatuan Penyakit Jarang Jumpa Malaysia
Persatuan Sindrom Prader-Willi Malaysia
Persatuan Spinal Muscular Atrophy Malaysia
Pertubuhan Kebajikan Pesakit Ichthyosis Malaysia
Persatuan Albinisma Kuala Lumpur Dan Selangor
Malaysia Lysosomal Diseases Association (MLDA)
Find out more about how these rare disease champions are supporting, helping and making an impact on children and people living with rare disease.
RTM: PENYAKIT JARANG JUMPA-TERDAPAT 7 RIBU DI MALAYSIA SAHAJA [4 MAC 2019]
[ LIVE - Borak Bibir Merah Siri 62 ] Pengorbanan Ibu : Cabaran Jaga Anak Penyakit Jarang Jumpa
Change Begins with Us
Each and every one of us can do something today that can help fellow human beings with Rare Diseases to live more meaningful lives. Here are things we can all do:
Save lives by reading up, understanding and sharing information about Rare Diseases. There are plenty of empowering stories that capture the indomitable spirit of these individuals, that can serve as inspiration to all.
Give the National Rare Disease Framework the publicity it deserves. Alert your local MPs or influencers so that they can shed light on this matter. It has remained in the backburner for far too long.
Give what you can. Funds are useful and can have a direct impact on individuals with Rare Diseases. Keep in mind that those suffering from these diseases are not seeking sympathy, but rather your positive support and care so that they can be productive members of society too.
From bottom of our heart, thank you for all your support, contributions and importantly, love showered. You gave us not only kindness, but also HOPE for our FUTURE. THANK YOU!
Logon to www.rarediseasemalaysia.com for more info / stories about life of children and people living with rare disease in Malaysia.
Watch this space for more updates! Thank you!
Raised of MYR 100,000.00 target.
Siva is a caregiver of Swathi Nisha, his daughter, diagnosed with Infantile Pompe (rare disease). Swathi almost died when she was 6 months old due to delayed diagnosis and lack of funds to treat her at that time. After battling through many struggles in her upbringing, Swathi is now 5y old and despite communication and mobility challenges, Swathi is attending pre-school, almost like any normal child. As a rare caregiver and rare disease advocate, Siva strives to discover and bring together rare parents and drive awareness on rare disease in an aim to save and improve quality of life of rare disease patients, especially of children.
Siva received Malaysia Medical Association’s prestigious Healthcare Services Award 2021. Then Malaysia Prime Minister, YAB Tun Dr. Mahathir in 2018, launched Siva's website www.rarediseasemalaysia.com, which has state of Malaysia rare disease, statistics, stories and blogs. The website has its content in 4 major languages to help reach mass public from various ethnicities. Siva climbed Mount Kinabalu to raise funds and awareness for rare disease children. This effort was supported by the Ministry of Health (MOH), Malaysia and successfully raised RM 60,000 funds for the rare disease community. Siva has contributed to the IDEAS whitepaper on Malaysia Rare Disease (2019), which is a key input to MOH's National Rare Disease draft blueprint. Siva primarily advocates on rare disease awareness and national rare disease framework. This is achieved via multi-stakeholders collaboration and close partnership with the Ministry of Health Malaysia, Rare Disease NGO's, think tanks (IDEAS), corporates, and the public.
Siva advocates and speaks at events, appears in news and TV media, drives rare disease activities, as well as digital advocacy. Siva also collaborates closely with medical professionals from Hospital Kuala Lumpur, University Malaya, MMA, and doctors from various hospitals and clinics. Siva partners with many other Malaysia rare disease NGO's such as to promote their rare disease agenda, events and patient support groups. At regional level, Siva collaborates closely with Asia Pacific Alliance of Rare Disease Organisations (APARDO), Rainbow Across Borders, and Rare Disorder Society Singapore. Siva is an active contributor to Global Rare Disease Commission, a framework jointly setup by Takeda, EURODIS and Microsoft. In effort to empower and create young rare disease advocates, Siva partnered with National Organisation of Rare Disease (NORD US) and successfully nominated Malaysia's 1st student to NORD Summit 2019. The students from Brickfields Asia College have also initiated their Rare Disease Student Club, the 1st known private education institute.