I don’t generally post personal stuff here, but last weekend I spent a day with various patient organisations: #nonprofits that represent groups of people with specific illnesses. Some better known e.g. MS, lung and breast cancer, some very rare like epidermolysis bullosa, a condition that results in blistering of the skin, or haemophilia, a bleeding disorder that can even cause spontaneous bleeding. By definition, rare diseases means not many people suffer from it. But the lower occurrence also means less awareness and advocacy, which in turn unfortunately also generally leads to less access to subsidies, treatment, and overall support. Why am I sharing this? Partly cause raising awareness of these illnesses helps build community, and #communities help provide support, especially for those who really need it. And partly because under the radar, behind closed doors, in homes and in the back office, there’s an army of #unsungheroes supporting, caring for and fund-raising for patients, engaging with regulators, participating in clinical trials, and generally putting in a huge amount of effort to represent those patients who can’t represent themselves. One of the most insightful things I took away from the day was someone saying: “We exist as a #volunteernonprofit group because there’s a gap in the system. Success would mean we aren’t needed anymore.” So here’s a HUGE shout out to all the unsung heroes for plugging that gap. You are all awesome and an inspiration 🙏🏼👏🏼❤️ http://haemophilia.org.sg/ https://lnkd.in/gRsvfdUb https://www.bcf.org.sg/ https://lccs.com.sg/leap/
Quek Teck Meng
7mo
nice gesture. Gerald Foo
Your beautiful post makes me realise we don't only share a background of SAN/Shell Alumni Network, but also a dedication to the Rare Disease space. I am leading 2 foundation in that area for 12 years by now. Your post totally resonates. There is a gap in the system for rare disease. And whilst there are many things that are challenging about it... it does challenge us to bring out the best in us and we can co-create value like a family, which is incredibly inspiring and heartwarming and I truly enjoy the sense of purpose I get out of it. Let's talk about it some time.