Saturday, January 28, 2012

Out of the loop for too long...

I've been MIA for the last few months, and I'm sorry about that. My day job has finally caught up with me. There's too much to do and way too little time.

So I'm trying to make a quick, fresh start here -- an easier-to-read blog layout, with the addition of daily updates that show the most recently-published Behcet's research abstracts and FREE articles that are available online. You should see these listings change every day in the right-hand column, with links to the abstracts/articles. A big benefit is that I don't have to do the updating myself... both listings are RSS feeds that come direct from PubMed. Go to the right-hand column to subscribe to this blog by email or RSS.

UPDATE: Unfortunately, PubMed's links for new articles and abstracts won't show up in emails that go to this blog's subscribers. Until I can find a work-around, please bookmark this blog and return to it to check for the daily update.


Ongoing Rare Disease Study

Researchers at Keck Graduate Institute in Claremont, California, are studying serum samples in an attempt to identify and characterize new diagnostic biomarkers of cells, proteins and/or nucleic acids of rare diseases. The study is funded in part by a grant from the National Science Foundation. The National Organization of Rare Disorders (NORD) is a partner and plays an advisory role. The project is designed to provide a better understanding of the similarities and differences in the patients of rare disease populations and to ultimately help select specific forms of treatment. Healthy family members may participate as part of the control group.

At this time, the study is recruiting Behcet's patients and their healthy family members living in the United States. Serum samples from Behcet's patients will be obtained during the course of the patient's next routine lab work procedures as scheduled through their primary physician. The samples will then be sent to the KGI lab in California, at no cost to patients.

If interested in participating, please review the Consent Form before calling and leaving a message on the ABDA hotline at (800) 723-4238 or at (631) 656-0537. Mirta will call you back with more details on how to get involved.

The American Behcet's Disease Association has also set up partnerships with a couple of organizations:

1) The CoRDS registry (Coordination of Rare Diseases at Sanford:

The Coordination of Rare Diseases At Sanford (CoRDS) is a registry at Sanford Research in Sioux Falls, SD. It collects information on patients diagnosed with a rare disease to help accelerate research into rare diseases. The registry was developed because access to information about rare diseases presents a challenge to researchers, patients and their families. CoRDS provides a way for researchers conducting clinical trials to search for individuals who would be able to participate in their clinical trial, and keeps individuals aware of the opportunities to participate in clinical trials.

If you know of anyone who would be interested in enrolling, they may send their contact information to CoRDS personnel via email or by phone at 605-312-6413. Anyone can learn more about CoRDS at

2) Eurodis

EURORDIS is a non-governmental patient-driven alliance of patient organizations representing more than 492 rare diseases patient organizations in over 46 countries, and currently translates information in seven (7) languages. To learn more, click on:
To establish a free membership:

Since the website is translated in different languages, look in the upper right area of webpage and find the “Language” area. You can then click on the language you speak/read, i.e., EN (English).
Then, select Behcet’s Disease/Syndrome under the “Green RareConnect” area located on the lower left side of the web page.

Email subscribers: Check for daily research updates --

1 comment:

  1. Thanks! Joanne for the information. Gary is going backward somewhat and we are trying to come up with what to try next. I often feel like we have to be the ones to research options, make those suggestions, hope it is the right thing to do and then sell the doctors into coming up with the plan that they take all the credit for devising should it be positive!
    This week his rhumetologist visit after his Remicaid IV asked how he was doing and he told him about having return of stomach issues, aniexity and increased back with back. We were then told that none of that is due to BD, so how are your eyes and ulcers?
    We just gave up. In the past I try to put articles on my i-Pad and share the most pertient (in my opinion) with him, but he forget from visit to visit that BD is more than eyes and ulcers.....
    We then went to his pain management appointment who also was more interested in counting pills and telling us when to contact for refills than anything else. I know he is becoming so frustrated. I have debated with contacting NY's Institute....The distance and travel costs, worry me, then if we did it, would any of the doctors even be willing to listen?

    Hope you are hanging in and have a good week,
    Jeanne' from TX