Usually after the Annual Meeting as the days blend into Summer, we have a period of quiet time at the office to clean off our desks, unpack boxes and follow-up on all the new opportunities generated from the meeting. This year, there were so many new opportunities there was little time to “dig our toes in the sand”, although Will did manage to take a break to get married and I vacationed away my “day to get a year older.”
Here’s what we’re juggling:
Already it’s time to prepare for the 2012 Annual Meeting. Save the date for BOSTON May 18-20, 2012, and see more info at www.pemphigus.org/annualmeeting. Terry Wolinsky-McDonald, Sonia Tramel, Greg Wright from the BOD, and Will Zrnchik are working closely with Dr. Razzaque Ahmed and the Blistering Diseases Clinic and other area leaders to host one of the largest and most informative meetings ever. If you have skills that could add to the organization or fundraising for this meeting, please contact me at email@example.com.
Your Board of Directors approved a budget for a research study of delays to diagnosis. It’s a short online survey to document where people go when they have symptoms and what doctors are doing and saying — the ones that go awry and the ones that help. This will allow us to identify key areas where education and outreach can move the lever to better diagnosis and allow us to apply for grants to fund this education. If you were diagnosed within the last 18 months please answer this survey (see page 3) — there are likely 300 new P/P patients a year in the US and we need over 100 to be secure in valid survey results.
I have been working to develop inroads in the Pharma industry, attending several drug development conferences and having meetings with many pharma companies to generate research opportunities based on the data in our Registry and opportunities for basic science through blood and tissue donations. In addition I have been speaking with Medical Advisory Board members and small bio-tech firms to generate interest in research projects on drug compounds that my be effective with disease mechanisms that cause P/P.
I’ll be off again shortly to an Orphan Drug Industry Conference and then to Washington DC to advocate with the NIH (www.nih.gov) and NIAMS (www.niams.nih.gov) for increased funding in the orphan and autoimmune areas. In the meantime, contact Will at the office or Marc Yale and his team of Peer Health Coaches if we can assist with anything.