Global Genes has done a wonderful job of bringing together rare disease patients and caregivers to share experiences and resources. They help unify the rare disease community to raise awareness of rare diseases (which collectively affect one in ten Americans) and advocate for beneficial public policy.
Global Genes identifies what resources would be most helpful for patients and patient advocacy organizations and then creates them, making them available free of charge to anyone who could benefit from them. A great example would be the toolkits which tackle tough issues such as how to help a child with rare disease transition into adulthood.
RARE Daily, the blog of Global Genes, provides a platform for rare disease patients and advocates to raise awareness of a specific rare disease, share an experience which could be insightful to another patient, and discuss the importance of public policy at a state and local level.
The staff of Global Genes is warm and caring, and makes each of us feel important. Having a rare disease can be isolating, but Global Genes helps me make connections to other patients and fosters a true sense of community.
As a rare disease patient and a donor to Global Genes, I find it to be a unique organization that really makes a difference.
On a daily basis I see Global Genes reach out and touch those on the Rare Disease community like no other organization that I know of. I can't state in strong enough terms how much Global Genes impacts the lives of those with rare diseases and their families. Simply a remarkable group of people!
Global Genes is the community I need since I have a rare gene deletion with no foundation to support me. I thank god for these great people and all they do! Fabulous educators!
Global Genes is a strong patient advocacy group for Rare Disorders. Global Genes shows by example what advocacy for patients/families living with rare disorders is, how to learn to become effective advocates and how to help the rare disease community as a whole. Global Genes continuously provides resources rare disease advocates need to help strengthen their individual rare disease community. So thankful for this great organization!
Global Genes Project Rare fills a gap that is desperately needed in the rare disease community. Under the umbrella of GG smaller patient groups can have a larger and united voice as we all advocate for better solutions and treatments for the more than 7000 rare diseases. Their mission and commitment to helping patients and caregivers effected by rare diseases is truly inspiring. They offer hope, support and raise an incredible amount of awareness for those in the rare disease community.
Global Genes/RARE Project filled a much-needed role in the rare disease community. Previously, many people suffering from rare diseases had no place to turn, until Nicole Boice started this outstanding organization. She has given families hope in many ways: by working with biotech companies to develop better treatments for rare diseases; by advocating in Washington, D.C. to bring awareness and more government funding to rare diseases; and by connecting families with each other so they are no longer alone. Nicole Boice is one-in-a-million and has already made a huge impact with Global Genes. I can't wait to see what she does next for the rare disease community!
Global Genes plays a very important role in the rare disease advocacy space. While most organizations are focused on specific diseases, Global Genes is focused on supporting all of those advocacy groups, empowering them to better serve their own missions, as well as increasing awareness about rare disease in the public.
The leadership has a visionary as well as a capable, experienced executive team.
They are highly respected in the healthcare industry and have made a tremendous impact in the relatively short time they've been in existence. I strongly recommend this organization.
I am in awe of this organization and its dedication to those suffering from rare diseases. It's so heartwarming to hear and read the stories of those less fortunate. This organization is all about love!
I never knew the vast # of people who have a rare disease, until this organization began. With the # of people worldwide, it's really not so "rare". I believe in the tireless work that the group is doing to help advance research in this area, advocate for patients and families, and to celebrate what it means to have a rare disease by bringing the community together. I also love that it started from a true grassroots effort and enjoy seeing it grow.
Working in the area of rare disease therapeutic research and development, the need to align collaboratively to identify end to end solutions - from drug discovery to reimbursement of new therapeutics- for patients is greatly apparent to truly make transformative changes and accelerate finding cures. Global Genes/RARE Project not only brings patients and patient advocates together, supporting them in finding solutions in the now, but also brings together clinical and industry thought leaders to determine the transformative changes needed to truly make a difference through advocacy, education and research. The team and the community surrounding this organization is unparalleled in its determination and commitment in making a dramatic impact on patient lives.
For so many in this world who are struggling for answers with a rare disease, the Global Genes Network and RARE Project are the place to connect. This non-profit was founded from first-hand experience of knowing what it's like to desperately want to help someone you love, but having no where to turn for resources. The lack of a centralized information exchange for patients, caregivers, and the medical community needed to be changed, and the founder has done just that with her army of volunteers, advocates, and experts in the medical communities. The success of the Global Genes Network and RARE Project, in such a short time, in making connections that lead to diagnoses, new treatments, and changed lives is immeasurable! You just need one person to care as much as you do when you're struggling with a rare disease, and this non-profit multiplies that one person you need into millions more who care. So grateful!
I am father to identical twins with a Rare Disease (Niemann Pick Type-C). The Global Genes Project has been invaluable in helping me to better understand how to make progress. From healthcare, to non-profit creation/management, and legislative action, the Global Genes organization has been there for me. As a result, I agreed to join the Board and work to grow this fantastic and much needed role in our community.
As a patient advocate, helping in the rare cancer area, I am impressed with the willingness of the Global Gene/RARE project to seek solutions for support and research across the many diseases under this umbrella. As more is know about the genetic sources of diseases, and the changes that occur in cancer due to genetic mutations, there will be greater need and coordination of research. This group will be essential in doing just this. Their ability to work together, as exemplified by the recent conference, is noteworthy.
The Global Genes Project is an incredibly important organization, without which, many small rare disease organizations and patient advocates would never receive the education they need to make an impact. Besides distributing informational toolkits on things like how to start a non-profit and what sort of patient tools are available out there for patients to use--they provide a place for a community to get involved. Between their website, rare meet-ups, blog and social networks--The Global Genes Project provides both a physical and virtual haven for patients, parents, advocates, and the general public.
At this year's 2nd Annual Tribute to Champions of Hope Gala they raised money specifically to go to families in need of immediate genetic testing to uncover their rare diagnosis and end a horrible, confusing and what can often be VERY expensive journey for families to go through.
They also provide a continuously updated "Rare List" including all of the known rare diseases affecting patients internationally.
As I learn more about the Global Genes charity, I am amazed at the dedication of the people who work for this organization. Their hearts are united in finding cures for the diseases that no one is talking about. It is exciting to see how they are bringing professionals together to find answers for people who had no where to turn.
Global Genes does incredible work in connecting rare disease advocates and organizations, assisting them in their collective and individual efforts, identifying and sharing best practices, and connecting advocacy with industry in order to make all of the advocacy, disease research, and drug development efforts more effective and efficient. I recently spoke on social media in rare disease advocacy at their RARE Patient Advocacy Summit and all of the sessions brought additional skills to my set or greater understanding to my efforts. I also attended their Gala which not only raises funds for this great cause but does that by highlighting amazing advocates. I look forward to watching and participating in where this organization will head in the future!
I have participated with Global Genes in Washington DC for Rare Disease Day twice. They are a wealth of knowledge about Rare Diseases and policy. They share their knowledge with everyone. They are one of the leaders in the Rare Disease community.
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.