MassBio's Strategic Plan

Posts tagged ‘Patient Advocacy’

Rare Disease Research

MassBio continued its #Impact2020 Twitter Chat Series with a discussion of rare disease research today and tomorrow, in Massachusetts and beyond.

There are approximately 30 million people living with a rare disease in the USA, between 27 and 36 million in the EU, and collectively around the globe, the rare disease community is estimated to include 350 million people. There are more than 7,000 rare diseases, many of them with no treatment or cure.

Many rare disease therapies are under development in Massachusetts and these leading researchers are pushing for accelerated approval pathways.

In this Twitter chat, we discussed the current state of rare disease research, the clinical and regulatory challenges for rare disease research, and how patients and patient advocates are making a difference.

Click here to read the conversation!

rare twitter chat


Patient Advocacy for the Future

MassBio launched Impact 2020 on April 3, 2014. The report lays a path forward for the future of life sciences in Massachusetts, and at the heart of it all is the patient, so we decided to host a Twitter Chat about patients and patient advocacy.

Patients and patient advocates have historically played a very important role in shaping the biotechnology industry and its innovative therapies. In the future, as the healthcare system undergoes a major shift, patients will play an even more critical role.

To ensure innovative, valuable therapies make it to patients as Massachusetts and the nation implement healthcare cost containment measures, it is critical that the patient voice is not only heard, but amplified.

For this April 15 chat, we tweeted from the Life Sciences Foundation’s Voices Carry event where we heard patient advocacy perspectives from David Meeker, John Maraganore, Bill Haseltine, and Joan Finnegan Brooks.

Click here to check out the conversation!

Storify Screenshot