ARPKD/CHF Represented at 2013 DIA Conference
Patient Advocate Fellowship Program and Patient Advocate Mentoring Program Leadership
By Colleen Zak
It was a privilege and honor to once again represent ARPKD/CHF at the Drug Information Association (DIA) Conference this summer; this time in Boston, Massachusetts, which provided many networking opportunities and educational sessions.
Here are highlights from last year’s conference. What resulted from that conference is participation is the ARPKD/CHF Alliance Patient Registry, a new scientific board member, and an invitation to be a FDA Patient Representative.
This year I took on more of a leadership role as both a Patient Advocate Alumni and by co-chairing a new initiative, a Patient Advocate Mentoring Program with DIA and the National Organization of Rare Disorders (NORD), with plans to carry this experience over in developing Patient Advocates specific for ARPKD/CHF.
Patient advocates are vital in getting past the red tape and making real progress on behalf of patients, this is now well documented by patient advocacy organizations led by parents such as ours. There is more work ahead and DIA’s outreach is global. We are currently in discussions for even more collaborations that could lead to better disease understanding and patient outcomes, which is what we are all about.
The two links below provide additional information from the 2013 DIA conference.
Video on the DIA Conference and 2013 Patient Advocate Fellowship Program
