Geena Russo, The ACE Agency
(860) 919-6850, Geena@theaceagency.com
ALISO VIEJO, Calif. – Global Genes®, the leading rare disease patient advocacy organization, celebrates 10 years of creating a symbol of hope and a community of support for patients, caregivers, and clinical partners. This milestone will be honored by Global Genes over the next year including Giving Tuesday this November.
What began as one woman’s desperate effort to support her friend’s son, has transformed into the ultimate network of rare disease advocacy. In 2008, Nicole Boice, founder of Global Genes, sought to fill the void in the rare community and create awareness for rare disease affecting 1 in 10 Americans. There are more than 7,000 distinct rare diseases identified and 350 million people worldwide are affected. Like Nicole’s friend’s son, later diagnosed with Jouberts Syndrome, 50 percent of people affected by rare diseases are children and are in a race to find a diagnosis. Among these striking statistics, Boice saw hope.
Over the last decade an evolution has occurred in the rare disease sector. Science and technology continue to converge and help accelerate patient diagnosis and drug development. Rare disease advocates have not only built support networks, but are now actively engaged in funding research and future cures, and patients have become a central point for driving rare disease forward like never before.
“Using the last 10 years as a launch pad, we have an opportunity to help create change and continue to accelerate forward movement in rare disease in the next decade,” said Boice. “Serving over 500 patient organizations and thousands of individuals, Global Genes has never been better positioned to help create impact for patients in rare disease. We are laser focused on increasing support, looking globally and helping determine ways for disease communities to flourish. We continue to raise the bar and hold ourselves and our partners accountable to better serve patients and the communities they care about, wherever they reside.”
Global Genes’ #DecadeofHope 10-year anniversary campaign will highlight stories of success and positive impact on rare disease patients and families over the past decade.
“I lost my husband to a rare form of cancer and my son is fiercely fighting the same disease,” said Debra Melikian, Caregiver, and a mom on a mission to fund rare disease research. “The support and network Global Genes have afforded me has truly made my mission easier and fueled my genuine passion to find a cure.”
Global Genes is a source of support and community for those families whose lives have been affected by rare disease.
For more information and to further financially support our ongoing efforts, please visit https://globalgenes.org/give/.