The Global Genes project is making incredible strides in helping to raise awareness for the thousands of rare diseases that exist, to provide resources for those who suffer and their families to improve quality of life, and to affect policy changes to accelerate the path to effective treatments and cures for these diseases. Bravo!
This is a RARE non profit that knows its target audience and how to elevate and motivate them. (Like what I did there..get it RARE?) A lot of groups with great intentions attempt to get off the ground and fumble with direction. In the short time I've volunteered with the Global Genes RARE Project after finding support for a rare diagnosis in my own family I learned that the people here are motivated and doers. There is much more action because of all the talk by this group than most any other out there. The leaders are true leaders in the sense they inspire others to do more and be better.
Global Genes is an a true assist and leader in the rare disease community. They offer support, resources and information to both patients and rare disease organizations. When I began my work as an advocate for Cryoglobulinemia they shared with me the contacts and network connections that would benefit me most at the time. Through their support and those within that network the Alliance for Cryoglobulinemia is establish. It is my honor as a Global Genes Advocacy leader and committee head to join their efforts as they develop and strengthen strategies for the Rare Disease community.
Most non-profit organizations for rare diseases are started by a family or family member that is affected in some way by that disease. These organizations are typically small, they operate on shoestring budgets, and they work their missions form grassroots efforts.
Global Genes is an incredible organization that advocates for all rare diseases and their non-profit support groups. Global Genes enables these grassroots groups to advocate for their disease and educate at a level that is very difficult to reach for smaller organizations. Through fulfilling their mission, Global Genes brings a level of impact that could only be achieved through teamwork and collaboration.
Global Genes is a distinguished leader in the rare and genetic disease community. The organization advocates for a multitude of patients, young and old, who suffer with debilitating conditions. As a patient with CADASIL, (a rare genetic neurological disease), I am a voice in the CADASIL community. By also being a member of the Global Genes community (as a committee member, Facebook group participant, blogger, etc), I am learning ways we can all come together to help everyone affected by rare and genetic diseases. As separate disease organizations, we are small. As part of Global Genes, we are huge and our voices are more readily heard. Global Genes is doing amazing things to bring awareness to rare and genetic diseases. I am proud and thankful to be part of the Global Genes community.
What a great organization! They raise awareness for those who have rare diseases. They provide resources for patients and families to help their causes. Global Genes also helps connect doctors, research scientists and pharmaceutical companies. Together for one cause they promote change & help aide in legislation to raise awareness for rare disease. This is a multifaceted organization that can help with the cause to promote awareness for the 7000 rare diseases of the world.
Great organization working to help raise awareness for people with rare and genetic conditions. Have a great online Facebook community that is very active!
MAD- make a difference has been a revolution amongst d youngsters around d nation!! its aim at providing education n help to the underprivileged children in various parts of the country has given a chance to a lot of youngsters who always wanted to help but dint know how they could get involved in this front..we reached out to the world to make a difference in these young lives..am proud to say that i made a difference..we made a difference..we can still make a lot of difference...GO MAD!!!