A giant step in developing National Rare Disease Strategic Plan for Malaysia 😊👏👏👏👏
Rare disease quick facts :
1. More than 7,000 rare diseases globally and continue increasing
2. 80 pct of rare diseases have genetic origins and are present for the patient's entire life
3. Symptoms begin in infancy or childhood in 50% of rare diseases
4. Effective treatments are only available for about 5% of rare diseases
5. 30% of children will die before their fifth birthday unless early treatment is given
6. 8,000-10,000 people are estimated to have a rare disease in Malaysia(base on prevalence 1 in 4,000)
7. Some medicines can cost each patient more than RM 1mil a year
8. Patients will need these medicines for life which is a significant financial burden
9. Funding support will ease financial burden and stress on patients and their families
When all the key stakeholders gather and contribute their idea to come up with the first Rare Disease Framework(blue print), I cried as all of us are working relentlessly crushing their heads until 10 pm.
We have to thank for their sacrifice on behalf of the whole nation well being.
Today we prove to the world that we made it. Congratulations everyone! Am really proud for all your commitment and dedication to make it happen. Hari ini Dalam Sejarah indeed.
Kudos to Kementerian Kesihatan Malaysia for organizing this meaningful event
Rgds Trustee of RDFAM /
President of MLDA
Ir YS Lee 🙏💕