Sook Yee Yap | Vice President
Malaysian Rare Disorders Society | Malaysia

Sook Yee Yap, Vice President, Malaysian Rare Disorders Society

Sook Yee Yap, is a mother to Branden Lim,8 years old who Spinal Muscular Atrophy ( SMA ). She and her husband Co-Founded of WeCareJourney in 2016, a not-profit organisation with a vision to champion CARE and support for families with Spinal Muscular Atrophy (SMA) & other disabilities in Malaysia. When Branden was diagnosed at the age of 1 year old, the awareness of this rare disease which is the number one genetic killer of babies below 2 years old was low and basic standard of care was not available in Malaysia. They aim to improve the standard of healthcare for SMA patients  and have access to available treatment/drug. She is also the Vice – President of Malaysian Rare Disorders Society which represent and support patients and families with rare disorders. With her experiences in marketing and brand management, they have created and continue to create awareness and advocate for SMA and rare diseases with the support of various stakeholders and collaborate with other non- profit organisations.

Appearances:



Phar-East Day 1 @ 12:00

Collaborative efforts in building the common ground for better accessibility and treatment

  • Key actions to bridge the gaps between stakeholders to provide for population in need
  • Models in helping advocacy group to coordinate for better access to treatment
  • Building the common ground in promoting better collaboration between advocacy groups, government, pharma and other stakeholders
last published: 26/Sep/18 02:35 GMT

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