Rare Diseases eBook from Experts and Families

Rare diseases ebookRare Genomics Institute is a a nonprofit organisation that uses crowdsourced funding to help find cures for children with rare diseases.

They are offering a free e-book with inspiring family case studies, interviews from experts and information in a Parent’s Toolkit.

The book includes many interviews with genomics experts:

  • Dr. Ada Hamosh of Johns Hopkins shares her advice for parents of kids with rare diseases
  • Dr. Emil Kakkis develops drugs for rare diseases
  • Dr. Kary Mullis, Nobel Prize winner, shares advice for rare disease parents

Remarkable stories from families living with rare diseases:

  • Amylynne Volker’s son was the first child saved through DNA sequencing
  • Police officer, Mark Dant, raised over $3M for research that saved his son Ryan’s life
  • Retta Beery’s twins are alive due to her own exhaustive medical research and genomics

Available here.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s