Global Genes Shares Their Gratitude on World Rare Disease Day 2013
February 28, 2013
So few and far between come the days where members of the rare community can take a moment to reflect on their accomplishments as parents, as patients, as doctors and researchers—hospitals and nurses, friends and advocates. World Rare Disease Day isn’t just a day of spreading hope, awareness and enlightenment about rare disease—it is also a day to stop and say thank you to those who make living this rare life possible for the 300 million patients who live with rare and genetic disease around the world.
So on behalf of Global Genes, their staff, volunteers and supporters—we would like to say thank you.
Thank you to the moms and dads who fight for their children’s right to a long and healthy life, who work hard to afford the best quality care, and who devote time, energy, and unending love and support.
Thank you to the doctors who go the extra mile, suggest that one unthinkable test, and guide patients through their medical journeys.
Thank you to the receptionists, hospital employees and nursing staffs who distract us with laughter while we get IV’s, hold our hands during moments of pain, and provide support and comfort during procedures.
Thank you to the researchers who spend years perfecting the formulas that could one day improve our quality of life.
Thank you to the policy changers and the politicians who fight to protect the Orphan Drug Act and bring new tests into the fold for newborn screenings.
Thank you to the bloggers, the journalists, and those who shout from every form of social media to champion our cause.
Thank you to those who help in raising funds, and to those who donate everything from their precious time to their own healthy organs so that patients can have a better life.
Thank you to the volunteers who are a part of our community and the rare community at large.
And thank you to our readers who honor the hope we strive to share just by visiting us here at Global Genes.
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