A lot of deserved attention will be focused on rare diseases this week in Washington.
800 rare disease advocates will descend on Washington, DC to bring awareness in the nation’s capital.
The Rare Disease Week on Capitol Hill Legislative Conference and Hill Day is an event established for patients and caregivers, patient advocates, and patient advocacy organizations. While representatives from industry are invited to attend the Legislative Conference, the Hill day is for patients and caregivers, patients advocates, and patient advocacy organizations only.
Among the events planned are:
On Monday the 24th: the FDA’s Rare Disease Day Public Meeting is being livestreamed here.
On Tuesday the 25th: the Rare Disease Congressional Caucus briefing will be able to be seen here.
On Wednesday the 26th: Watch the Rare Disease Week Legislative Conference here.
Kudos to the folks at rareadvocates.org for putting together such a potentially eventful week.
NAM Opioid Poll Closes This Week
The National Academy of Medicine’s Action Collaborative on Countering the U.S. Opioid Epidemic is hosting a listening session to better understand the experiences and perspectives of persons living with chronic, non-cancer pain, including their experiences interacting with and navigating the health system.
If you have any questions, please email us at firstname.lastname@example.org
If you haven’t filled out the survey yet, you can here.
The content gathered from the listening session and the online survey will inform the creation of a “person-centered pain management journey map.” The journey map will outline approaches to effective communication that lead to strong clinical relationships and optimal quality of life for people with pain.
Are You Talking With Your Congressional Representative About Chronic Pain
As more chronic pain patients are concerned about shrinking access to medical providers and medication, a question we ask readers who express their concern is “Have you talked with Congressman or Congresswoman?”
The answer often is a negative.
Don’t underestimate the importance of personal contact.
If you know your Congressional representative, let him or her know by email or phone call that this is an issue they need to be addressing.
If you don’t know who he or she is, you can find out here by putting it in your zip code.