Salem Oaks Archives - Salem Oaks

Looking Back at Our Growth in 2019

Writing goals and expectations at the beginning of each year is a double-edged sword. On one hand, it is critical to provide some semblance of focus in the midst of all the activity around us. On the other, when looking back we see just how uninformed we were. Like trees, we don’t know what is…

Finding Our Crack in the Ice

She encouraged each of us to find our crack in the expansive ice of rare disease and drive a wedge into it. The effort of everyone continually working their own little crack (science, policy, direct experience, economics, medicine, fundraising, advocacy, or whatever) will eventually weaken the ice enough to shatter it. Together we can beat these diseases. This got me thinking about the contribution of Salem Oaks.

Remember Why We Are Doing All This

Meet Kyle Bryant On our next episode of Improbable Developments we welcome Kyle Bryant of the Friedreich’s Ataxia Research Alliance (FARA) to discuss his journey as a patient with Friedreich’s Ataxia (FA), as an active patient leader, and in his job as a liaison between the FA community and researchers. After being diagnosed with FA…

Back-to-School = Busy Schedules

I don’t know how this happens. I haven’t been formally in school for 25 years, but my calendar seems totally unable to shake the habit of “getting ready” for the next academic year. And the same seems to be true for Salem Oaks! We have so much planned for the fall that we thought…

Coming Soon: Improbable Developments Podcast

The science of drug discovery and development creates a rich landscape for all sorts of stories to unfold.

Each month we are going to talk to someone who was in the trenches of R&D and let them tell their story. We’ll be talking about medicines you may know and some that never saw the light of day.

Firmly Rooted

We dare to imagine a world in which people are equipped to collaborate to successfully shape the health ecosystem of the future. There is an awful lot of thought behind the mission of Salem Oaks. I’d like to take a few minutes to pull it apart and offer what we believe are the key elements.…

Don’t Miss This Rare Chance to Learn

Just over a year ago, I wrote a blog singing the praises of the Rare Drug Development Symposium co-sponsored by Global Genes and the Orphan Disease Center at the University of Penn. In my opinion, there were three defining characteristics of this event that set it apart from the rest. The Right People (Patients, family,…

But what does it mean to educate a patient?

Many individuals and organizations, including Salem Oaks, talk about patient education and health literacy. But what does it mean to educate a patient? Is the opposite of an educated patient an uneducated patient? Last month Salem Oaks presented a panel discussionat Patients as Partnersin Philadelphia. The objective of the session was to demonstrate the value of educating…

Resources are Great, But…

Resources are great. But what if you don’t know that they exist, or where to find them? Patient foundations are an invaluable collection of resources for their respective patient groups. They offer support, various libraries of information and disease facts, resources (financial, medical, community oriented, mental health services, etc.) and, if available, access to patient…

Confidence is Key By Guest Author Dillon Head

In life, you’re given a gift; confidence. What you do with that gift is up to you and only you. In my life I have also been given a few other “gifts” that I didn’t ask for, opened, and now I have to deal with them. At age 15 or 16 I, as well as…