February 29th is International Rare Disease Day, a special day set aside across the world to bring attention to the experiences and issues facing those with rare disorders (affecting 200,000 or fewer people.) As part of this initiative, the National Organization for Rare Disorders is organizing a national online photo gallery of those with rare disorders.
To participate, you need only take a photo of yourself (or your child) holding the Rare Disease Day logo (downloadable at the link below). Then, go to the link below and upload your photo. Fill out the form identifying you (or your child) as a person with Hermansky-Pudlak Syndrome or Chediak-Higashi Syndrome.