Blog
Zolgensma to be made available globally under a managed-access programme.
Zolgensma to be made available globally under a managed-access programme. Briefly, we understand that: In January 2020 they will give their gene therapy drug Zolgensma for free to eligible patients around the world, including Malaysia. They will give up to 100 doses of Zolgensma per year depending on production capacity, of which 50 doses is expected in the first half of 2020. MAPS is planned to continue after 2020. Only some patients who apply will be successful to get the
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. What an incredible opportunity
Wheelathon 2017 – A fun ride for SMA charity on wheels
In conjunction with the New Year Eve Carnival at Desa Parkcity, come join us at “SMAll Wheelathon Charity Ride” ♿🚴🏃🛴🏂 to make a BIG difference. Together, we will: create awareness for Spinal Muscular Atrophy (SMA) have a fun INCLUSIVE event with families and friends 👨👩👦👦👫🎉 Registration closes on 30 November 2017. Invite your family and friends to participate in this charity event. It will be fun day of doing good and a meaningful way to end the year. “If there’s
WECAREJOUNREY SHARING ON SMA WITH ORTOPHEDIC DEPARTMENT OF HUKM
In our journey for acknowledging and fight for SMA families’ rights and access to medication, WeCareJourney took another step by approaching doctors to acquire their supports. WeCareJourney was invited by Ortophedic Department of Hospital Universiti Kebangsaan Malaysia (HUKM) for a sharing session on SMA. The sharing session took place at Ortopedic Department on 11 July 2019 from 11 a.m. and ended almost at 1 p.m. It involved a group of doctors, specialists and trainees from Orthopedic Department of HUKM.
WeCare Journey to Kidzania KL!
Are you a family with children with disabilities? Would you like to visit Kidzania KL on Friday 26 Jan 2018 from 9.30am to 1pm? This trip is arranged by Persatuan WeCareJourney for families with special needs children (and siblings) only. For this year, the entrance for special needs families is again fully sponsored! (All other purchases e.g. food, drinks, more Kidzos, merchandise etc shall be borne separately by you.) Places are limited and on first come first served basis. Queue
We Are Not Alone
An informal get-together for parents with special needs children to share their experiences. A sharing session facilitated by Ms Sook Yee, a mother of a child with a life limiting genetic disorder (SMA) A facilitated discussion by an experienced marriage counsellor on levels of communication & handling conflicts between couples Take a break to enjoy the sharing session while your kids have fun experiencing a programme by English Champ DATE & TIME Sunday, January 21 at 2:30 PM – 5