Tags » Rare Disease

Tim Shaw has bold plan for living a full life with ALS

Tim Shaw is a former Penn State and Tennessee Titans linebacker who is an Uplifting Athletes Letterman. Recently during the ALS IceBucket Challenge, Shaw used the challenge to announce publicly that he had been diagnosed with the rare disease ALS. 1,432 more words

Uplifting Athletes

EURORDIS: “Living With A Rare Disease” Photo Contest

EURORDIS announces the opening of the EURORDIS Photo Contest 2014 this week. Anyone with an interest in rare diseases can participate. The Photo Contest gives participants a chance “to communicate visually the many diverse facts of living with a rare disease.”  If one is not a photographer, one can participate by voting for one’s favorite photographs. 121 more words

Rare Diseases

Mexico: Top 7 Most Common Rare Diseases

Awareness of rare diseases in Mexico has increased notably by means of the media, internet, and the work of patient advocacy groups that demand healthcare for patients. 344 more words

Rare Diseases

The Road to Here: A Diagnosis

A few days ago I posted – very late – about Aurelia’s 1st birthday. In that post I talk a bit about her challenges and how she’s been our mystery baby. 1,783 more words


Welcoming Claire

Like Isabel said, each time I meet someone with HPTH it is like finding a family member. Claire is now my second HPTH sister who I have met in person. 64 more words


Orphan Drugs And Rare Diseases: ROAR Awards

The 2014 ROAR (Rare & Orphan Advocacy & Research) Awards are an opportunity to recognize and honor achievements in the last year, of contributions made by organizations and individuals from the commercial, patient, and rare disease advocacy communities. 102 more words

Orphan Drug Development