Global Alliance for Rheumatic and Congenital Hearts转发了
From Journalism to Advocacy and Support: Empowering Parents of Children with Congenital Heart Defects
Lately, I've been reminded of the wisdom from one of the greatest ultramarathon runners, ?????????? ??????????. In his book ?????? & ??????, he shares how many ultra-runners lose the race just before the finish line because they convince themselves they've already made it. The body listens and stops. This lesson has become my mantra: ?????????????? ???? ???????? ?????????? ?????? ???? ????????. The mindset of "???? ???????????? ???? ?????????? ?????? ???????? ???? ??????????????" felt especially relevant during the final day of the ???????????? ???????? ?????????????? ????????????, which brought together patients, caregivers, advocates, and experts from around the world. Here are my key takeaways on ?????? ???????????????????? ???? ???????????????????? for children and adults with Congenital Heart Defects, especially when engaging governments: (1) ???????????????????? ?????? ?????????? ?????????? ???? ?????????? ???????? ??????????????????-?????????? ?????????? ?????????????? ???? ???????????????????????????????. (2) ???? ???????? ???????? ?????????? ?????????? (?????? ????????????????????????), ?????? ???????? ???? ?????????? ?????? ???????????????? ???? ???????? ??????????????????????????. Mothers, patients, legislators, healthcare professionals, and pharma all have their own terminologies. It's not enough to have a strong message; it needs to be translated effectively for each stakeholder. That's where ?????????????????????????? becomes essential. Just like in an ultramarathon, it's easier when there are people cheering, offering support, and sharing the burden. Engaging diverse stakeholders requires a team effort - to ???????????? ?????? ???????????????with a shared goal. A big shoutout to the inspiring speakers and advocates: Global Alliance for Rheumatic and Congenital Hearts Mark Roeder Audelia Villarreal Bistra Zheleva Your insights continue to guide us on this long road ahead. If you're interested in learning more about the incredible work at Global ARCH, check out their website: https://global-arch.org
So grateful to have you there ??