New parents dream about watching their babies walk for the first time and saying their first word.
They dream about clapping in the crowd as their children graduate high school, get accepted to college and find a job that fulfills them. They want their children to have big dreams–to be a firefighter or an astronaut. They want to see their love of Legos turn into a passion for architecture, their tenacity for arguments turn into a law career, or their curiosity about life lead them to a degree for investigative journalism.
What they never dream of is how their child’s normal symptoms will turn into a rare disease.
No mother predicts that she’ll be the one sleeping on a recliner beside their child’s bed in the hospital–watching them endure treatment or waiting for treatments to be made while they fight for their lives. They never dream that the steady beat of a heart monitor would become a soothing sound to know that at least, for tonight, someone is watching over their baby. Someone who may be able to provide even one minute of comfort or relief to their struggling child.
Families of the rare disease community have a common dream, though. To learn as much as they possibly can. To meet other patients like themselves who they can turn to for support and guidance. To be active in the fight for change in policy, to urge lawmakers to see the urgency in the need for orphan drug development. And to have hope that there are dreams that will come true after this disease is eradicated from their child’s life.
The families affected by rare disease want the privilege of having hope.
As the year comes to an end, we at The Global Genes Project urge you to consider giving a gift that will inspire that hope this holiday season. With your help, we can continue to support the global rare disease community with programs that build awareness, build connections and provide resources to positively impact affected patients and families.
Together we are making a difference
By supporting Global Genes™, you help make it possible for those affected by one of the more than 7,000 rare diseases worldwide to benefit from our educational, outreach and support resources — free of charge.
Some of the many Patient Education and Advocacy resources we offered in 2013 include:
- 7 Rare Disease Webinars – reaching more than 2,000 registered advocates and supporters.
- Second Annual RARE Patient Advocacy Summit – benefiting 400+ patient advocates.
- RARE Foundation Alliance – providing 135 member groups with resources, industry and peer collaboration forums.
- RARE Blog – Offering 50,000 readers per month critical rare disease- specific information updates, stories and online tips.
- RARE Concierge – providing 100 patients with needed resources through our unique disease database and help-desk.
Inspire Answers. Knowledge. Hope.
You can also designate your gift to support our Undiagnosed Patient Program. By helping families receive this breakthrough in diagnostic testing, you bring them closer to reaching an accurate diagnosis, treatment and even cures that would otherwise be out of their reach.
Please click HERE to make an online, tax-deductible gift. Remember to make your donation by December 31, 2013 to take advantage of year-end tax deductions.
Thank you for your commitment and generosity. Together we can inspire hope and change lives this holiday season.