Robin Powers, Patient Advocate. by The Health Design Podcast published on 2023-02-17T12:27:24Z Robin Powers is an expert in Ehlers-Danlos syndrome and other rare connective tissue disorders. She is a PCORI Ambassador, she is a seasoned advocate for rare diseases and patients with undiagnosed conditions and is also a motivational speaker. She is a researcher and biochemical pharmacologist, earning her degree at Buffalo State College in 2019. Genre Science Comment by Robin A Powers Wow 😲 I must say I am very honored by your review of what I saidas well as your ideas. I have gone with the name. @thephysicansays and I am planning on including videos that you spoke of! Please keep your eyes peeled as I have created a blog and I am making a news letter with the name RareAbility. ( Which will become a nonprofit again when I can afford to. You're support means everything to me and keeps me going. 2023-03-15T19:12:39Z Comment by Alexandra McManus, Director McManus R&D Consulting Hi Robin, You were so 'matter of fact' in telling your extraordinary story. Health should be a human right for all but sometimes it takes superhuman efforts. Those 'roads that lead to nowhere' seem to have been so prevalent for those with rare diseases. I also love the idea of developing educational videos based on the elevator pitches you noted. Moyez has used small vignettes with actors to demonstrate good/bad/effective consultations/ communications etc. I think it would be extremely beneficial to patients, families, carers, clinicians and researchers to develop a series of actor led/ patient informed vignettes of the experiences of patients with rare diseases. These would not only inform but also help to give patients the confidence to make their own video or use the vignettes as the basis of role plays to give them the confidence to be their own advocates. Good luck with completing your Masters. I look forward to your future series “Doctors say the darndest things”. 2023-02-23T00:52:39Z