International Experience Exchange with Patients Organisations (IEEPO)
"This conference was my first introduction to personalised healthcare and got to understand its transformative impact on the way healthcare is delivered and why it should matter for patient groups. I learnt also on the shift in patient participation in healthcare, where patients can be true collaborators with pharma, holding the key to unlocking the full potential of healthcare innovation. There were a number of breakout workshops for us to explore the impact of policy, data, and patient partnership on personalised healthcare and drug development.
However, let me instead share more on those activities that offer a more immediate and direct relevance to families with SMA and rare diseases in Malaysia".-Edmund
Phar-East Conference 2019
The Phar-East conference held in March 2019 is a leading pharma and biotech conference for Asia.
Being an industry conference, it was interesting to be invited back again to participate in a panel
discussion, and this time to also present on the opportunities and challenges of a stakeholder
engagement journey from a patient advocate perspective.
I spent the large part of the conference attending various talks on immunotherapy, clinical trials,
pharma 4.0, market access and pricing, regulatory affairs; and one topic which I attended for the first
is around biotech investments.
Here are some of my impressions:
World Orphan Drug Congress USA 2019
WeCareJourney’s founder Edmund was invited to participate at the recent World Orphan Drug Congress USA (“WODC USA”) 2019. The WODC USA focuses on the most pressing challenges and opportunities to bring rare disease therapies to patients faster, and brings together a global gathering of 1,200 leaders in orphan drugs from 50 countries, featuring over 135 presentations covering all aspects of orphan drug development and rare disease research.
Here are some of his takeaways from WODC USA.
Do you know that rare disease day is on the last day of February? Many of you may not be aware of how many patients and families are affected by rare diseases and their impact on Malaysia.
The Health Ministry has been urged to expedite access to a new drug therapy to treat those affected by spinal muscular atrophy (SMA), especially children, said the founder of NGO WeCareJourney Yap Sook Yee.
Open Letter to PH Government: “Appeal for increased support for rare disease treatment in Budget 2019”
With Budget 2019, the Government can demonstrate equity by expanding treatment for rare diseases, and fairness and equality by funding SMA orphan drugs. This paves the way for children with SMA to get lifesaving and lifechanging medicines like Spinraza. We also look forward to promising new SMA orphan drugs that are expected to be approved for use in the near future.
Do you know? 1 in 50 carry the defective SMA gene.
SMA is a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. It is the number one genetic cause of death for infants.
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