National Organization For Rare Disorders

4 recommendations and reviews from 4 people

• Referral from September 27, 2017
  

  NotLurk1ng asked:

  Can anyone recomend a great rheumatologist? My allergist is on hail mary passes on diagnosing my mysterious, painful, debilitating disorder and wants to pass me back to a rheumatologist. My last rheumatologist was... the worst. My objective explanation for this would be so long my joints would go level 11 on the pain scale. Anyone got a great rheumatologist? Is there such a thing?

  

  sirthomasthecat replied:

  Get a copy of your medical records and lab work etc. Make sure they are correct. Check out: www.autoinflammatory.org and rarediseases.org Best tip I ever got: You are your doctors boss. No one is looking out for you- except you.

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• Referral from October 11, 2016
  

  Stacy H. asked:

  I need help. I'm looking for a non-profit for the disease my sister died of for friends and family to donate to, but her disease is not well known and there are limited organizations. Is there some way I can vet them? (Already check BBB)

  

  Natalie A. replied:

  rarediseases.org and guidestar.org should be a place to start - NORD has links to reputable nonprofits, and Guidestar offers comprehensive tax and other info on non-profits.

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• Referral from December 29, 2011
  

  Lewis N. asked:

  Hello all. This is my first time posting here in this group. I'm looking for help for my daughter and need suggestions and ideas and resources. Almost two years ago I posted about my daughter and her being diagnosed with ITP. My daughter at this point is in dire financial straits, and is actually no closer to a solution to her problem. She is in debt to the tune of $6000 dollars because of this condition, and she's responsible to pay and it looks like she will have to have her spleen removed in order to hopefully put an end to this problem. Does anyone in the group know of any organizations that help out people in these circumstances? She's been told that she doesn't qualify for government assistance, and yet she is barely getting by at this point. I cannot believe that there are people who are able to qualify for Welfare when they are very capable of working and yet my kid who is legally disabled because of her condition cannot get financial assistance to help cover her medical bills. Thanks a bunch in advance...Lew Lewis Newmark

  

  Caroline H. replied:

  http://www.rarediseases.org/

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• Referral from October 22, 2001
  

  smatthews@goeaston.net asked:

  Hello everyone. I've been having a time of it and to make it all better, my neurologist who I just met and diagnosed me with PTC on Wednesday tells me she has to leave the practice within 90 days. I...

  

  I hope things are going better for you. I thought the following information might help. http://www.rarediseases.org/ NIH/National Institute of Neurological Disorders and Stroke "Brain Resources and Information Network" (BRAIN) Bethesda MD 20824 3014965751 8003529424 e-mail: N/A Home Page: http://www.ninds.nih.gov/ Brain and Pituitary Foundation of America 281 East Moody Avenue Fresno CA 93720-1524 2094340610 e-mail: N/A Home Page: N/A

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