Friday, September 11, 2015
by Mark Beckwith
I mentioned that I would tell more about how hard all 27 of our National Institutes of Health will be working to not let rare diseases fall through the cracks going forward. In another sweeping legislative move, Congress mandated your National Institutes of Health to create a Strategic Plan for the next 5 years. This makes me chuckle quietly, because I remember when Nevus Outreach was mandated to “create a Strategic Plan for the next 5 years.”
I guess that means we’re in good company! Given how much work it has been for Nevus Outreach (a $300,000 agency), I can only imagine how challenging it is for a $32 billion agency.
But I digress. (but what a fun digression).
Anyway, back on task: Strategic Planning is good. I like that when we reviewed our Strategic Plan after 5 years, we learned that we had actually accomplished much of what we had set out to do. Talk about a feel-good moment! But now we’re faced with honing a plan for the next 5 years. At least we have something really good to build on. Your Board of Directors (and friends) will be taking that on in 2016.
At the campus of the National Institutes of Health this week in Bethesda, I sat in on an overview of the Strategic Planning process they were subjecting themselves to, presented by Dr. Lawrence Tabak, and was given opportunity to comment. Honestly I didn’t bring a lot to the conversation except to affirm, on behalf of all of us at Nevus Outreach and Naevus Global, that these three mandates they had already given themselves were going in a very good direction from our view of the world:
To ensure that rare and pediatric diseases remain a priority
To advance research opportunities presented by rare diseases
To have patients as partners and not as subjects
The Time Has Come
This rare disease thing is catching on. As I alluded in yesterday’s blog, sometimes timing can be one of the most important parts of a strategy. I think the time has come for all of us in the greater nevus community to try to find a way to be one of the voices heard next February on the joint National Organization for Rare Diseases (NORD) and European Organization for Rare Diseases (EURORDIS) Rare Disease Day.
Please take a moment to comment using the Facebook gateway, below. I’m interested in what you think about Nevus Outreach’s involvement in Rare Disease Day. Thanks.