Global Genes has helped me in so many ways. They helped me in organizing A Day for Rare Diseases event as well as anytime I need to ask a question about rare diseases. They are amazing!
I am so thankful for Global Genes for being wonderful and helping spread awareness and raise funds for rare diseases. I will be forever grateful for them allowing me to volunteer to help raise funds for Galactosemia, a rare disease that my son was born with!
As a volunteer I have had the pleasure of watching Global Genes blossom and grow helping thousands of children with rare diseases. This organization is so determined to get funding for research in order to help these wonderful children. I have witnessed the passion with which they operate and the compassion they do it with. It has been so rewarding to be a part of this wonderful organization.
As a volunteer at one of the fundraisers, it was obvious that Global Genes is passionate about the work and research they are doing to find cures for these devastating rare childrens diseases. It was such an eye-opener to see what these children and their families go through. Listening to the stories of the families was heart-wrenching.
Global Genes is a wonderful non profit. I am pleased to be a volunteer on their team. Keep up the great work!
Global Genes has reached the bay area and we cannot be happier! I held an event with a local restaurant to raise funds as well as awareness for their cause and many people were very receptive! Their work throughout the year helps bring them closer to their mission goal and eliminate the challenges of rare disease.
Started as a grass roots non-profit to help people find resources and have a unified voice for rare disease. It has grown and continues to live its mission of helping. So many of my personal friends have benefited from Global Genes by making connections with others in the rare disease community and finding the much needed help they were seeking from doctors and researchers.. I will continue to support Global Genes as a volunteer and donor!
Global Genes opened our eyes to the world of both rare and genetic. They filled my family with information, new friends and most important......HOPE. We consider the whole Global Genes community part of our family and feel privileged and blessed to know of them.
Lise, Matt and Emily Muller
My children both have a rare disease that we fight everyday. It will be with them for their entire life unless we can find a cure. I joined the Global Genes Project hoping they might be researching our disease and they were. That gave me hope! Since then we have been active participants in Rare Disease Day on February 28th each year and I love reading their facebook page. I especially love their patient highlights that they have been doing lately. Thank you to the Global Genes Project for fighting for rare diseases!
Great "place" to meet other parents of children with rare disorders! Great "place" to get info and stay connected!
Global Genes has helped countless patients and caregivers navigate the murky waters that otherwise would leave them lost. They are always there to help with education, referrals and a caring partner, willing to raise the awareness of their story, their disease. I have supported their efforts through our organizational commitments and personal volunteering. One of the most important roles they play is in the development of advocate leaders. I am consistently impressed by their passion for RARE and I am proud to be a sponsor of their efforts.
I have been working with Global Genes since 2008 and have watched it touch the lives of so many children with rare diseases. It has now reached out to families all over the world. Still trying to fine cures and treatments for the many rare diseases. The small staff works many long hours contacting Pharma companies, Doctors, Parent Advocates and lobby in Washington D.C. to get the help these beautiful children need to survive. Global Genes gives "hope".
Global Genes is doing incredible work in connecting people who had no where to turn to get help for their child. I have been a volunteer since 2008 and have be amazed at their accomplishments. They have a wonderful staff of caring people, who work very hard to make all this happen. Global Genes has made awareness of diseases that were never heard of as well as the family's struggles. I wish Globel Genes continued success.
To those who want to learn about this nonprofit, just read the stories of these wonderful children, it will touch your heart.
my daughter has CF and it is considered a rare disease. Global Genes is doing a fabulous job bringing CF and other rare diseases and the associated challenges to the fore front!
By far, the most well organized and dedicated charity I've had the pleasure of working with. The services they provide and the visionary leadership is second to none.
Global Genes has increased rare disease group communication and helped to unite this large community. Their tool kits are easy and free for all. They have always lent a helping hand when I have asked.
Global Genes educates and empowers patients and caregivers on rare diseases . They help them with tools that can bring together smaller communities, as well as take communities to the next level to find patients and treatments for the rare diseases they suffer from. Truly a wonderful organization that has helped me personally in this rare disease journey.
Global Genes has been instrumental in helping raise more awareness for the rare disease that I was born with, Klippel-Feil Syndrome. They have helped our group Klippel-Feil Syndrome Freedom to reach more people effected by this rare genetic condition by featuring patient stories and assisting in our global awareness day by sending valuable information that we were able to share at our events across the U.S.
Global Genes is such a great organization! Their positive impact in the Rare Disease Community has united a once segmented community and changed lives!
What an awesome organization! This is an organization that brings people together! Invaluable information on Advocacy and ways to help, ways to get people to listen and teach others about Rare Disease.
Global Genes is that rare mix of news and technical expertise that manages to communicate equally well to the general public as well as the scientific community. Its Rare Disease Toolkit is one of the best I've seen put together by an organization to help navigate unchartered waters for the newly diagnosed. The organization's advocacy efforts for patients and clinicians is terrific and Global Genes does an excellent job of helping the conversation between those groups begin and flourish. The website designed and maintained by Global Genes is a godsend, featuring webinars, documentaries, facts, resources and now a daily publication. I would recommend this group's work and efforts to anyone interested in learning, sharing and understanding more about the Rare Disease community.
I first heard of Global Genes this past Feb because of Rare Disorders Day. I am nothing but impressed with this organization. They go out of their way to help patients with rare disorders and those who advocate and care for these patients. I was lucky enough to attend their advocacy summit and awards gala. This is what a non profit should do for the community they serve. They should actually serve them. They should be there to make life better for the community they serve. Global Genes does all of this and more. Never before have a been with a group that was there specifically for me, with no hidden agenda. They offer support, information, guidance, medical assistance. They understand what it is like to have someone you love affected by a rare disorder. This is one of the most top notch nonprofits I have ever been involved with. I have nothing but praise for Global Genes.
I first became aware of Global Genes this past summer. They quickly stood out as an organization with a focus on an amazing mission and a finger on the pulse of what their community needs. The resources they are offering are much needed in the often isolating world of living with rare disease, and their willingness to partner with others to spread their message of hope and offer great resources is fantastic. As a holistic health coach AND a patient with a rare disease, I highly recommend them.
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.