It's been a great sharing with all the Rare Disease physicians and parents during today Transforming Rare Lives International Conference of 20 Years Retrospect and Prospect on Rare Disease in Taiwan conference. 😘😘😘
The last meeting with Taiwan Foundation for Rare Disorders founders Serena Wu and Prof Chen was 10 years ago in Taipei. I still remember their motivation quote to me :"do it crazily with strong passion and you shall succeed".
Their encouragement I still upheld until today. It's a wonderful day to meet up with them again, thanks Ruth for inviting us for tomorrow sharing session in conjuction with International Conference of 20 Year Retrospect and Prospect on Rare Disease in Taiwan 🙏
We are not alone ♥️
Attending 1 day sharing session on Pompe Disease Management workshop in Singapore with counterpart from other Asia representatives including Thailand, Singapore, Vietnam, Hong Kong and Taiwan. It's been a great learning session and kudos to their great achievement in gaining drug access.
Singapore has setup a Rare Disease fund with 70 mil seeds fund in July 19. Government making a pledge with 3 dollars for every 1 dollar donation. On top of that, donor can get 250% tax exemption! This is very good model for benchmarking.
Experience the second virtual event held at https://therarefair.com !!! Block your time tomorrow (27 Sept 2019) at 8.30pm (Malaysia Time) and watch Mr. Siva SK (Key Note Speaker) talked about "Developing Effective Rare DIsease Policies and Improving Access to Care: The View from Malaysia."
The Rare Fair is the only 100% virtual, 100% inclusive event for the rare disease community. You can log on from anywhere and live chats in community booths all over the world.
Dear friends and colleagues, MLDA would like to share the 13th International symposium on MPS and related diseases, which will be held in Bahia, Brazil from 13 Aug to 17 Aug 2014.
By bringing patients, parents and families together with professionals, the symposium will be able to share information on all aspects of MPS and related disorders. The overall objective is to advance the quality of care and treatment. As well as musculoskeletal disease and MPS, the brain and MPS, and new approaches to treatment, the main topics of the symposium will be pricing and reimbursement. All will be covered in joint sessions attended by doctors, scientists, patients and patients’ families. Separately, doctors and scientists will also attend more detailed sessions on the CNS, bone disease and novel approaches to treatment.
Families will not only have opportunities to meet peers from other countries, but will be able to attend sessions on optimizing care, dealing with clinical issues and surgery in MPS, and ‘living fully with MPS’. Special activities will be organised for young patients and their siblings, who will be accompanied by trained volunteers.
If you are interested to join please contact us.
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