#patient driven

[mytechmag]

Ro, one of the popular New York-based patient-driven telehealth organization, ideates to invest in its vertically-incorporated environment, including the national pharmacy operating framework and Collaborative Care Center.

Ro, one of the popular New York-based patient-driven telehealth organization, ideates to invest in its vertically-incorporated environment, including the national pharmacy operating framework and Collaborative Care Center.

[leftnotabled]

[Photo of me at the Rare Disease Day celebration at the Boston State House]

I can’t even begin to describe how amazing today was. Totally worth the 2 hour drive to Boston to be able to connect with over 400 people who are part of the rare disease community - patients, care givers, advocates, doctors and industry allies. While I disagree that everything should be patient driven - I have way better things to do than fight a doctors office or insurance company for recognition...like feed myself - I do agree that the patient voice, my voice, our voices, is not incorporated even close to enough and sometimes not at all when we see specialists. 

I got to talk to other sick young people, I got to talk to people who run amazing organizations, I got to see the Massachusetts community fighting for recognition for people like me. 

While I still don’t and may never have a diagnosis I was in a room full of people who understood that. In the 2.5 years that I have been sick I have never felt that kind of love and acceptance and understanding before. It’s time to start making waves in Western Mass where our resources and access is much more seriously limited. 

Thank you to everyone in the Rare Disease community today. I didn’t know I could feel this loved and honored and cared about and supported.