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Aug 10, 2025

Additions To Compassionate Allowance List

     Ever since Michael Astrue was Commissioner from 2007 to 2013 the Social Security has been trumpeting additions to its list of illnesses deserving compassionate allowances of disability claims. They're mostly, if not completely, rare disorders. Astrue had experience working with the rare disorder community -- and there is one.  I suppose the list has some use for a tiny number of people but in my view it's of little practical consequence. In fact, it's been my impression that additions to the list seem to come out when the agency is under public criticism. Anyway, Social Security is adding these new disorders to the compassionate allowance list:

  • Bilateral Anophthalmia
  • Carey-Fineman-Ziter Syndrome
  • Harlequin Ichthyosis - Child
  • LMNA-related Congenital Muscular Dystrophy
  • Zhu-Tokita-Takenouchi-Kim Syndrome
  • Au-Kline Syndrome
  • Hematopoietic Stem Cell Transplantation
  • Hematopoietic Stem Cell Transplantation
  • Progressive Muscular Atrophy
  • Pulmonary Amyloidosis – AL Type
  • Rasmussen Encephalitis
  • Thymic Carcinoma
  • Turnpenny-Fry Syndrome
  • WHO Grade III Meningiomas 

5 comments:

  1. It seems to come out when the Agency is under public criticism? That covers a lot of space! LOL

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  2. It comes out the same month every year.

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  3. Harlequin icthyosis (do not google image search it) is basically a death sentence, so it belongs on the list.

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  4. Virtually all the conditions on the list are both rare and likely fatal in short order. The last is why it makes little difference since these cases would almost certainly be approved in relatively short order, special process or no. the only good the list does is maybe move those cases up a little and allow more consideration to be given to other cases that require more development.

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