Cross-Condition Analysis
Sefton Eisenhart
November 20, 2020
When a rare disease community is working to find a treatment, it’s easy to fall victim to tunnel vision. Multiple parties are always involved. Coordination
Blog Category:
Viewpoints
CRISPR, a Nobel Prize, and the Future of Gene Editing
Sefton Eisenhart
October 15, 2020
This year’s Nobel Prize in Chemistry was awarded to two scientists, Dr. Emmanuelle Charpentier of the Max Planck Unit for the Science of Pathogens in
Reflection on the Word “Patient”
Sefton Eisenhart
October 8, 2020
In a medical context, the word “patient” conjures different images and emotions for every person that uses it. For some, it signifies bravery in the
The Pros and Cons of Dr. Google
Sefton Eisenhart
August 21, 2020
Consensus is hard to come by in 2020. A growing distrust of institutions has coalesced with an unprecedented amount of information, giving rise to a
The Many Roles of Rare Parents
Sefton Eisenhart
July 9, 2020
In the world of rare disease, many of the biggest advancements occur in large part due to the work of the parents of patients. When
Changes in the Rare Disease Community Because of COVID
Sefton Eisenhart
April 30, 2020
Quarantining in place has left the world facing a lot of challenges, but for members of the rare disease community, the situation is often more
How TREND Is Moving Forward
Sarah M Inoue
April 23, 2020
As COVID-19 continues to spread around the world, we are realizing more and more how much we don’t know about the illness. The disease is
Defined by What We Don’t Know
Lucy Steinert
April 9, 2020
We have seen coronaviruses before, but we still don’t know enough about COVID-19. We don’t have a set of drugs or therapies. We are only
The Impact of Coronavirus on One Rare Disease Advocate
Sefton Eisenhart
March 26, 2020
News of COVID-19 still occupies nearly every headline. While newscasters are spending most of their airtime reiterating the same dozen or so talking points, one
What the Rare Disease Community Can Show Us About Coronavirus
Sefton Eisenhart
March 19, 2020
Even though our last blog post was about Coronavirus, given the current climate, I couldn’t see any reason to write about anything else. TREND is