great books about rare diseases and disorders: image of alternating squares. some square of solid color background with the title of the post interspersed; other squares have images from the cover of the books on them)

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[vc_row][vc_column][vc_message message_box_style=”3d” style=”round” icon_fontawesome=”fa fa-exclamation”]This fantastic list of books about rare diseases and disorders that you might be interested in reading was pulled together by Rae Hower. Rae is joining me to coordinate the Disability Book & Movie Club. Get to know her through her bio at the end of this post, and please enjoy this awesome list.

Don’t forget: this US library citizen takes requests on books. If you want to read something below but don’t want to buy it, just head over to your local library and request it. They should be buying these books anyway![/vc_message][vc_empty_space][vc_separator color=”turquoise” style=”shadow” border_width=”6″ el_width=”60″][vc_empty_space][/vc_column][/vc_row][vc_row][vc_column][vc_column_text]

Rare Diseases and Disorders:

February largely features rare diseases and disorders in terms of Disability Awareness focus:

This being so,  we’ve collected books and movies about rare diseases and disorders to read and learn more. 


  • Interesting statistics about how many people are affected by rare diseases can be found here:
  • Please join in our Disability Movie Club discussion on Brain on Fire, happening February 28th. Information about it is linked here.


Books on Rare Diseases that You Might Be Interested in Reading for Rare Disease Month:

[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column width=”1/4″][vc_column_text][/vc_column_text][/vc_column][vc_column width=”3/4″][vc_empty_space][vc_empty_space][vc_column_text]You’ll Miss Me When I’m Gone (young adult novel about a family affected by Huntington’s Disease)[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column width=”1/4″][vc_column_text]

[/vc_column_text][/vc_column][vc_column width=”3/4″][vc_empty_space][vc_empty_space][vc_column_text]Rare Is Everywhere (kids book about rare animals)[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column width=”1/4″][vc_column_text]

[/vc_column_text][/vc_column][vc_column width=”3/4″][vc_empty_space][vc_empty_space][vc_column_text]Run to the Light (Batten disease, written from family member perspective)[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column width=”1/4″][vc_column_text]

[/vc_column_text][/vc_column][vc_column width=”3/4″][vc_empty_space][vc_empty_space][vc_column_text]Saving Henry: A Mother’s Journey (Franconi Anemia, written from family member perspective)[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column width=”1/4″][vc_column_text]

[/vc_column_text][/vc_column][vc_column width=”3/4″][vc_empty_space][vc_empty_space][vc_column_text]CMT and Me: An intimate 75-year journey of love, loss and refusal to surrender to a disabling disease (Charcot-Marie-Tooth disease, written by a person with CMT)[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column width=”1/4″][vc_column_text]

[/vc_column_text][/vc_column][vc_column width=”3/4″][vc_empty_space][vc_empty_space][vc_column_text]Brain on Fire: My Month of Madness (about a woman who is eventually diagnosed with anti-NMDA receptor encephalitis) – we’re discussing this February 28th – more information linked here)[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column][vc_column_text]

Books on Rare Diseases 

Rare diseases and disorders are something we’re always interested in learning more about. These books will help to shed light on some aspects of a few rare diseases. If you know of other books (- especially ones you have personally read and recommend!), please share.

Also, don’t forget to join the Disability Book and Movie Club on Facebook for more discussion.[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column width=”2/3″][vc_single_image image=”52208″ style=”vc_box_shadow_border_circle_2″ onclick=”custom_link” img_link_target=”_blank” title=”Movies About Rare Diseases and Disorders” link=””][/vc_column][vc_column width=”1/3″][vc_column_text]

Check Out Movies About Rare Diseases and Disorders!

Watch, learn, love – or at least, discuss.[/vc_column_text][vc_btn title=”Go Watch” style=”3d” shape=”round” color=”info” link=”||target:%20_blank|”][/vc_column][/vc_row][vc_row][vc_column width=”1/4″][vc_empty_space][vc_empty_space][vc_single_image image=”52160″ img_size=”medium” style=”vc_box_shadow_border_circle_2″][vc_empty_space][/vc_column][vc_column width=”3/4″][vc_empty_space][vc_message message_box_style=”outline” style=”round” icon_fontawesome=”fa fa-user-circle-o”]Rae is a mom of three whose eyes were opened to the beautiful diverse disability community (that she previously ignored!) when her daughter was diagnosed with Down syndrome. She is learning to be an ally by listening to people with disabilities and reading/watching their books, blogs and movies, and by going to as many trainings as she can. Rae is a part time international public health practitioner who likes yoga, loves the beach, and used to cook (she never cleaned). She occasionally dabbles in textile arts.[/vc_message][/vc_column][/vc_row][vc_row][vc_column][vc_empty_space][vc_separator color=”turquoise” style=”shadow” border_width=”6″ el_width=”60″][vc_column_text][/vc_column_text][vc_empty_space][/vc_column][/vc_row]

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  1. Being disabled myself, I’m always looking for upbeat books about people who are physically impaired. Here’s a rare and uplifting novel I really liked that might be of interest to those who can’t speak. It’s about a night janitor in a big city who has been unable to speak since being the victim of persistent physical and mental abuse as a child. It’s called “My Life As a Frog” and it’s written by an author with a solid writing style. The story recounts how the janitor wonders what it’s like to be a “smart person,” like the people who work in the skyscrapers he cleans. Then he goes back home to sleep during the day and has a series of life-altering dreams. To say that he finds out what it’s like to be “smart” is an understatement. Well worth reading. There is even a video about it:

  2. i am disabled have m.e . asperger syndrome long list health issues .i take part in a lot lot research
    people never see the every day effects .
    my blog,http;//

    i am on twitter,supersnooper

  3. I stumbled across this post while researching books about rare disease for a column I’m writing. I was thrilled to see my own book on your list! Thanks so much for including Run to the Light (and Taylor’s Tale) in your recommended reads. You picked great ones!

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