Helpful Doctors are Returning!


We’ve done this in the past and I’d like to do it again.

Our earlier database was hacked and I didn’t feel it was worth rebuilding because so much of the info became outdated.

If you are happy with your team of doctors and feel like you have gotten good care please list them, their specialty, where they are located and anything else you’d like to say.

If you don’t want to list them here, you may use the form at

I’m making a continually updating database so you can watch it unfold here:

The Non-US doctors will be listed here:

I can tell it’s going to be a wide page so you’ll have to scroll across the bottom. As more entries (besides my test one!) are added, you can sort by state, country, etc.

Thank you in advance! A good doctor can change a life…but not every good doctor is good for every patient.

Rare Disease Day, 2015



On February 27, 2015, the National Institutes of Health (NIH) will celebrate the eighth annual Rare Disease Day with a day-long celebration and recognition of the various rare diseases research activities supported by the NCATS’ Office of Rare Diseases Research, the NIH Clinical Center, and other NIH Institutes and Centers; the Food and Drug Administration’s (FDA) Office of Orphan Product Development; other Federal Government agencies; the National Organization for Rare Disorders; the Genetic Alliance; Global Genes; and Uplifting Athletes. Rare Disease Day at NIH will be held in the Masur Auditorium (Clinical Center, Building 10) from 8:30 a.m. to 5:00 p.m. Attendance is free and open to the public.

Rare Disease Day at NIH is appropriate for patients and patient advocates, health care providers, researchers, industry representatives, and government employees. We will have talks from academic and government scientists, industry representatives, and the lay community.

In addition to the various scheduled talks (see agenda), posters and exhibits from many groups relevant to the rare diseases research community will be displayed. In association with Global Genes, we again encourage all attendees to wear their favorite pair of jeans.

The Rare Disease Day 2015 event will also be webcast and Clinical Center tours will be available for in-person attendees.

Register Here.


Murphy’s Laws for Cushing’s Disease*

Another great post – with a perfect picture 🙂

a tale of two tumors

1.  If you have 28 new symptoms, 27 of them will be vague.

2.  If there are 18 diseases consistent with your vague symptoms, you will be tested for 17 of them.

3.  If you rule out the first 17 diseases, no one will test you for the 18th one (Cushing’s) as it is too rare.

4.  If you think you have Cushing’s and are overweight, you will be told you don’t have Cushing’s – you just need to eat better and exercise more.  If you think you have Cushing’s and are thin, you will be told you don’t have Cushing’s because Cushing’s patient are overweight.

5. If you do get tested for Cushing’s, the test will come back negative.  Twice.

6.  When your tests for Cushing’s finally come back positive, you will be told you don’t have Cushing’s but you are definitely stressed out.

7.  If you have a pituitary tumor and…

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