Rare Disease Day celebrated 2/28/14

The main objective of Rare Disease Day was to raise awareness internationally among the general public and decision makers about rare diseases/syndromes and their impact on people’s lives. This years’s theme was Care and the slogan was “Joining together for Better Care”.

Caring for people living with a rare disease has many facets. Some patients have access to medicines while others have no treatment available. Some patients are fairly independent while others require intensive physical assistance and equipment. Care can consist of special equipment, expert medical consultation, physical therapy, social services, medicines, respite for family members, and much more. For most children and adults living with a rare disease, primary care is provided by family members.

This is certainly true for Pitt Hopkins Syndrome (PTHS) which is not only a Rare Disease but is an Ultra Rare Disease. The Pitt Hopkins community helped raise awareness of PTHS and other rare diseases and syndromes by supporting Rare Disease Day on 28th February 2014.  To learn more please go to http://rarediseaseday.us/about/ or http://www.rarediseaseday.org

The Pitt Hopkins community was involved with this year’s Rare Disease Day with posting, tweeting and sharing on social media. Official hashtags, #RareDiseaseDay and #PittHopkins were used in posts to bring awareness to Rare Diseases around the world. On Facebook pitthopkins.org was tagged in posts; on Twitter @PittHopkins was tagged.