Living with a Rare Disease Worldwide. Volume 2

“In many ways, the term “rare diseases” is a misnomer. Roughly 10% of the population has one of approximately 7,000 of these elusive ailments. Taken together, the number of rare disease patients and those who love and care for them may easily number half a billion people – and the advances being made in diagnosis and treatment may benefit far more.
Yet investment in rare disease – not only by governments and drugmakers but by the news media – often falls short.
That is why the National Press Foundation works tirelessly to create the Rare Disease Reporting Fellowship, with the support of Fondation Ipsen, to give reporters access to experts in genetics, targeted testing and drug development and patient advocacy.”
Anne Godlasky (President, National Press Foundation, Washington D.C.)

“One of the great challenges faced by people living with rare diseases is that the public knows so little of their struggles, challenges, and the need for unrelenting resilience in a world that doesn’t understand. Coupled to the 300 million people living with rare diseases are hundreds of millions of caregivers who sacrifice time, work and money in the name of love. Working with the National Press Foundation, top world journalists highlight in these writings the plights of patients living with rare diseases and those who care for them. The stories are informative, dramatic, and heart-rending. I thank most the patients living with rare diseases and the people who love them for sharing their stories with these gifted journalists.”
James A. Levine (MD, PhD, Professor, President, Fondation Ipsen, Paris)

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