New Research

[KarenAnne]

Subject: NIH Undianosed Diseases Program

May 19, 2008

Dr. Doug Buckner & the Morgellons Research Foundation are pleased to announce their participation in today's NIH Undiagnosed Diseases teleconference during which Dr Buckner advocated for continued research into the cause of Morgellons Disease. Participants of this teleconference were aware of Morgellons disease and voiced support for further research into the condition.

The purpose of the teleconference was for NIH to share information about their Undiagnosed Diseases Program, a pilot program aimed at answering questions about medical conditions which have eluded diagnosis. Please note that patients with this, and any other, undiagnosed disease can be considered for this special program by first being referred to NIH by their physician or health-care provider. Although only 50-100 patients will be accepted into this program annually, we feel that it is a wonderful opportunity for all undiagnosed patients. Please see links below for additional details on this program including strict eligibility requirements.

If you are referred to this program, and would like to share any information with us, we would be very happy to hear from you.
Best wishes,
Morgellons Research Foundation

Frequently asked Questions: Undiagnosed Diseases Program:

Undiagnosed Diseases Program
Some patients wait years for a definitive diagnosis. Using a unique combination of scientific and medical expertise and resources at the National Institutes of Health (NIH), the Undiagnosed Diseases Program pursues two goals:

To provide answers to patients with mysterious conditions that have long eluded diagnosis
To advance medical knowledge about rare and common diseases

The program is trans-NIH in scope. It is organized by the National Human Genome Research Institute (NHGRI), the NIH Office of Rare Diseases (ORD) and the NIH Clinical Center. Many medical specialties will contribute expertise needed to conduct the program, including endocrinology, immunology, oncology, dermatology, dentistry, cardiology, and genetics, which are represented among the dozens of participating senior attending physicians who may participate in the program's clinical research.
Any longstanding medical condition that eludes diagnosis by a referring physician can be considered undiagnosed and may be of interest to this clinical research program. Of the total number of cases that may be referred to this program, a very limited number will be invited to proceed in the study at the discretion of the program's medical team.

If you are interested in participating in this clinical research program, discuss the option with your primary physician or health-care provider (nurse practitioner or physician's assistant). Information specialists at the Clinical Center's Patient Recruitment Call Center (1-866-444-8806) can provide more information about eligibility and what kinds of medical information referring physicians must submit for review by the program's medical team. You or your health-care provider can call.
Patients must be referred by a physician or health-care provider. Information your physician must provide directly to NIH includes:
A summary letter describing your condition, when it was first noted and your current health status
A list of treatments and medications that have already been tried and their effects
Copies of reports and results of pertinent diagnostic tests, along with X-rays, MRI results, and other imaging records/studies. Copies of the actual imaging studies are preferred.
Information for Patients
Information for Health Care Providers
NIH Launches Undiagnosed Diseases Program
NIH Office of Rare Diseases (ORD) - Undiagnosed Diseases Program
For more information call: 1-866-444-8806
Referrals to the program for potential acceptance must be made by primary care providers.

Morgellons Research Foundation Website

[Jo]

Hi ya Karen,

Thanks, sounds promising. It would be good for physicians to be aware of this to help get the ball rolling, if they have to make the referrals.

Maybe folks could push this info under their physicians noses...especially the docs that have lots of Morg patients.

Jo xxx

[hilly]

Karen Anne, Sorry I added the above earlier, no doubt under the wrong heading..so I guess you did'nt see it. !!! . Hilly

[Morgan]

Thank you Karen for sharing this new information.

Morgan

[KarenAnne]

Originally Posted by hilly

Karen Anne, Sorry I added the above earlier, no doubt under the wrong heading..so I guess you did'nt see it. !!! . Hilly

I'm sorry all, I did it again.
I guess that makes me a double-double poster, lol.
I'm just wanting to share what I find.
Karen