Pitching a rare disease treatment, vouchers and more underscores need for collaboration

Over the last few weeks I have been pitching the Phoenix Nest enzyme replacement work with LaBioMed in New York, working on proofs for several papers (here and here) and putting a blog together on the need for the rare pediatric disease priority review voucher. This is in addition to the usual grant writing projects and dodging deadlines for chapters and things that are overdue.

These are all pretty disparate projects and they all take significant resources. Throw into the mix the occasional new collaboration and I am left little time for writing this blog.

Yes all of these activities are pretty disparate but they achieve a few things.

  1. Help people do great science – by getting funds or providing some know how / skills
  2. Show others how to start companies for rare diseases
  3. Raise awareness for how we can improve the environment for doing more of #2
  4. Continue to learn so I can do more of #1
  5. Feed family and fund #2, 3, 4

I think its important to point out that there is an underlying theme to what I try to do and collaboration is the glue that holds it all together, without which none of it would be possible.



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