Rare Disease Day 2016: Patient Voice

Today is the ninth annual Rare Disease Day, an international advocacy day held on the last day of February — a rare day for rare people. Rare Disease Day 2016 recognizes the crucial role that patients play in voicing their needs and instigating change that improves their lives and the lives of their families and caregivers.

Rare Disease Day 2016

Dying Matters: Talk, Plan, Live

During Dying Matters Awareness Week (May 18-24), the Public Health Agency (PHA) is urging everyone to take the opportunity to talk openly with those closest to them about dying, death and bereavement. This year’s theme is ‘Talk, Plan, Live’ (hashtag #YODO, which stands for You Only Die Once).

Talk, Plan, Live

To the Edge of the Sky: the Fight to Save Children’s Lives and End Duchenne Muscular Dystrophy

New drugs are being developed to treat Duchenne Muscular Dystrophy — and many other rare diseases — but the treatments are stalled at the FDA. A new Kickstarter campaign is raising funds to complete a documentary about parents fighting to stop Duchenne Muscular Dystrophy and gain access to potentially life-saving drugs before the disease kills their children.

To the Edge of the Sky

kwiKBio Aims to Fast Track Research with Crowdsourcing Campaign

kwiKBio believes it’s taking too long to solve diseases and create cures. The company aims to combine advanced semantic web bioinformatics with contract research organization (CRO) business development in an e-commerce biomedical research portal. Think Wikipedia with an interactive research component coupled with Expedia for purchasing a ticket to a laboratory test.


Rare Disease Day 2015: How Rare Disease is Shaping the Future of Healthcare

Today is Rare Disease Day 2015, an international advocacy day to focus on the daily lives of patients, families and caregivers who are living with a rare disease. Rare disease communities have been responsible for the reinvention of many aspects of our healthcare system are truly paving the way for precision medicine.

We Are All Zebras