But, in order to seek funding to study a problem, donors and grantors require that one can accurately document the “need”, we need the evidence of this problem and, while we are at it, we are seeking answers to where/why doctors are making these errors so that we can target our education at critical “opportunity spots” where things go awry — for example where doctors may be lacking information on effective visual/clinical observations or use of appropriate diagnostic tests, or not have resources for an appropriate referral.
Once again WE NEED YOU! In these extremely rare diseases, for us to get accurate, significant data it requires that virtually everyone participate to help everyone. This is sort of the other side of the coin from the Power of One, “One” won’t do it this time; now we need the power of 100. We must document 100 “paths to diagnoses” in our online survey. The trick!? We can only survey folks who were diagnosed in the last 18 months, to prove that these delays are a current and ongoing problem.
If you have been diagnosed in the last 18 months we need your help. If you got a personal link, please do fill it out right away (we’ll stop re-“inviting” you if you do it!). If you did not get a link, but fit the criteria, please sen Will an email at will@ pemphigus.org, or 916.922.1289 x 1003 and he will send you one.
Together we can gain greater information and have a larger impact. Let’s!