Participants from all over the country converge on Southern California to lay the groundwork for the Global Genes Project’s continued growth, and increased efforts impacting the rare disease community.
The Global Genes Project hit a tipping point in early 2011, when it was clear that it had moved from an awareness campaign to an organization developing global interests and initiatives, with a global impact!
The Global Genes Project began as a campaign developed by multiple parent advocates, patient advocacy groups and stakeholders to raise awareness for those millions of families affected by rare disease globally. Based on feedback and involvement from the rare disease community, this campaign has grown to become an organization that is building an engaged ‘rare disease constituency/community’, and will soon be announcing the next phase of it’s Global Genes Fund. “Our goals are very simple, stated Nicole Boice co-founder of Global Genes Project, to raise awareness and help educate about the needs of the rare disease community as a whole, build an empowered rare disease constituency that can be mobilized (like breast cancer, aids and heart disease), and fund innovative research, therapies and treatments that will impact children within their lifetime.” Boice also stated that, “We have set the stage, we have shown traction and a need, and as a result, have attracted new rare disease champions that are going to work to ensure that our mission and goals will be met. We are very excited about what we can accomplish and the impact that can be made to help this community as a whole. We have BIG plans, and with the right people in place, we will be able to exceed expectations.”
What is really quite astonishing is that most of the work coming from the Global Genes Project has been created, developed and supported by volunteers and pro-bono efforts. The Global Genes Project would not be where it is today without the time and talent from those that have worked so hard early on to get the campaign and organization off the ground. Many people and organizations have joined the campaign because of their collective beliefs that we can build something really meaningful that can and will benefit the entire rare disease community. We are all on this journey together, and together we will succeed.
The Global Genes Project will be hosting it’s first Board of Directors meeting, Thursday June 2 in Newport Beach, California. Those in attendance will be representing the patient community, advocacy, industry and philanthropy.