I’m a rare disease patient, and I’ve worked as a patient advocate in the rare disease space for years. I have learned so much about drug development, industry engagement, and how to be a patient advocate from Global Genes. The connections I have made with other patients and advocates have been life changing, and I’m so grateful.
I LOVE GLOBAL GENES. They have provided amazing and unwavering support for the rare disease community for years. Their passion and imagination is unparalleled.
I was first introduced to Global Genes at a narcolepsy meet-up held in Chicago, in 2016. This is where I caught the advocacy bug, so to speak. I have attended several GG events. My favorite and •must attend• event each year is the Rare Disease Patient Advocacy Summit held every September in southern California. The networking, collaborating, and programs offered are invaluable! The staff and speakers are always stellar and the GG team is genuinely passionate about rare disease! I am grateful for the plethora of programs and resources that GG brings to the rare disease community all year through.
I've had the opportunity to attend two Global Genes events in 2019....Rare in the Road in Sioux Falls, South Dakota - a Global Genes advocacy partnership with the EveryLife Foundation and also Global Genes RARE Patient Advocacy Summit, an annual event in Southern California. Both events leave you feeling inspired and enthused. In particular, the Summit is a rare disease networking mecca - with opportunities to network built into the conference schedule, as well as many informal opportunities as well. I left this event with a list of must-do tasks in order to help my patient organization move the needle toward their mission... I'd say that was time worth spent away from home to walk away with many new contacts in the rare disease space, and a list of ideas that I could easily implement once back home!
Global Genes is the leading organization uniting the rare disease community. When newly diagnosed families message me, I always refer them to Global Genes to connect with their individual rare disease communities, and so they can learn how to become an even more powerful advocates for their child and community...Global Genes offers so many great resources and tools for patients and advocates. I always look forward to the RARE Patient Advocacy Summit that Global Genes hosts annually. It is an amazing conference, so thoughtfully planned and executed. I always leave feeling uplifted and more connected to my peers and friends in the rare disease community after attending a GG event. I'm truly grateful Global Genes exists to help bring hope to rare disease families like mine.
Global Genes is an incredible lighthouse in the dark storms of rare disease. They’ve connected me to many resources, fellow advocates and patients and industry leaders. They are dedicated to connecting all facets of rare disease to create impactful change. The knowledge they give the community through Summits, Workshops and events is giving valuable tools for advocates become stronger together. Global Genes is a game changer who is gives hope to so many who previously had none.
We have had so many resources that Global Gene told us about and referred us to! We are grateful for the far reaching influence Global Gene has to impact families and individuals with Rare Disorders. They have been willing to listen to topics at the conferences that we feel are helpful and relevant. Connecting with Global Gene has given our family hope for our son and help for his condition and for ways to care for him creating a better quality of life for him and our family.
Chuck, Tiffani, Micah,&Max Ulrich
Global Genes is such a needed resource and community builder for patients (and their families) with a rare disease. Their team works tirelessly to positively impact rare patients and really cares about the community they serve.
For the past two months, I have had the opportunity to intern at Global Genes. Simply put, it was one of the best experiences of my life. Not only did I feel supported by their amazing team, but I also was able to participate in some of their programs/ events, where I witnessed the care and dedication that they have for rare patients and their families. This team works tirelessly to ensure that rare individuals receive the proper support, education, and compassion needed to continue on in their medical journeys. Their commitment to eliminating rare diseases, spreading awareness, and providing hope is inspiring. I highly recommend attending or participating in their programs and events. My experience with Global Genes was meaningful and rewarding. I am looking forward to seeing what initiatives they will be part of next to advance the rare disease community. I can't wait to volunteer again with this group!
I work for a company who has partnered with Global Genes for many years. Global Genes is an organization that is composed of true professionals who deeply care about the patient communities they serve. They have always been very open to feedback and ideas while always staying true to their mission of supporting rare disease patients. The team is very passionate about their work and are extremely hard working and dedicated. They are a small but mighty team who manages to put together programs which are essential for the rare patient and advocate community. I could not ask for a better partner!
Global Genes is am amazing team of motivated and passionate individuals. The support and resources they provide to the rare disease community it unmatched. I came to the Global Genes Summit without expectations, but left with a renewed sense of purpose and vastly more education to provide support. It was one of the most important and thoughtful conferences I have attended. I cannot recommend them enough.
I went to the 2019 Summit (first time), and was shocked by the amount of resources available to me as a patient, and to my friends who are also struggling with their own rare disorders.
Unlike searching aimlessly on the web for hours about specific disorders, the Global Genes website offers guidance to help you navigate the ins-and-outs of things, catered towards caregivers, patients, and advocates - connecting dots I didn't even know were out there, nor had been mentioned by any of the many medical professionals I've seen over the past 3 years.
If you or a friend are living with (or are curious about) any rare disorder, PLEASE check out the Global Genes website, sign-up for an event near you, go to next year's summit, and get ready to feel and BE less alone.
On a personal level, Global Genes is near and dear to my heart! They helped assist a close family friend of mine get connected to community and it has completely changed her life. For that, I am forever grateful.
Global Genes is the world's leading rare disease advocacy group. They give patients a voice.
Global Genes is the number one rare disease organization and I could not be more grateful that I found them early on in my son's rare disease journey. With the most engaging and dedicated staff members, Global Genes is constantly exceeding my expectations with their events and engagement within the rare disease community! If you need community, connection, or direction in your rare disease journey then I cannot recommend getting involved with Global Genes more!
As a rare patient advocate, I have been an avid fan of Global Genes for some time A few years back, I read about the conference on their website and decided to attend. My daughter was diagnosed with Spinal Muscular Atrophy (SMA) at 15 months, and I was looking to broaden my perspective and it is during this conference that I fell in love with this very large rare community. Nicole, Amy and her talented team bring hope, inspiration and talent. They empower patients to think outside the box and gain valuable knowledge as well as a life time of friendships and connections. They share many valuable resources at no cost to families giving them the tools they need to be successful as a fledgling founder or patient advocate. I’m pleased to say I have brought many to this conference and it’s been a game changer for them as well. Global Genes is an organization that grows with the times and through its partnerships makes life better for so many of us forever changed by a rare diagnosis.
Global Genes is an amazing organization filled with some of the most passionate individuals I have met! Their visions and mission to empower, educate, and inspire those in the rare disease community is absolutely inspiring and Fulgent is happy to be part of their movement! They not only work to inspire the community, but they have made great efforts to work with our company to help remind ALL OF US that our jobs have purpose and we impact the lives of thousands an a daily basis!
As the head of patient advocacy for a rare disease pharmaceutical company, I often work with small advocacy groups that are interested in building their organizations but aren't sure how to go about this. Global Genes has been so supportive of these groups, providing resources, advice and guidance. To see these smaller groups learn from Global Genes and then make real progress towards their goals is incredibly rewarding.
Global Genes offers amazing resources to rare disease patients, families and other advocates at no cost. These include webinars and toolkits that have been carefully compiled with input from experts within the rare community on timely and relevant topics such as Navigating Health Insurance, Building a Care Notebook, Starting a Non-Profit and Parenting A Child with Life-Limiting Illness. They are very collaborative, partnering with other organizations such as the EveryLife Foundation for Rare Diseases to host RARE on the Road events across the country as well as the National Alliance for Caregiving to better understand the challenges faced by those who act as caregivers to children and adults with rare diseases. I highly recommend Global Genes as a resource to others in the rare community on a regular basis.
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.
About 6 months ago my life was rocked by getting my sons diagnosis of CHAMP1 , I knew I had to do something but really had no clue what that looked like. I went to one of there symposiums and since then I have been learning and connecting with people like minded and invested in helping me on my journey. Everyone in the organization is truly amazing and committed to helping. I'm so grateful for having met with the gg staff. They are second to none, I can't thank Nicole and Amy enough, so grateful for everything you do.
The center of focus for Global Genes is always the person with a rare disorder and the family. It has been wonderful to work and support with Global Genes to educate and raise awareness about rare disease. From an industry sponsor perspective, they have been creative in their outreach approach and in their guidance to work with patient groups. They truly are centered around the helpful approach. All I can say is they keep the momentum going!!!
Thank you for your support of a travel scholarship. We were able to attend the Rare Patient Summit 2018 in Irvine, CA. It was an amazing experience. The summit offered so much more than I expected. The educational sessions were informative and easy to understand. I actually realized how much as a caregiver, I forget about “caring” for me. I left the summit knowing that it is okay to show your emotions, to ask for help, think positive and stay strong. I learned from and connected with others that are going through the same struggles. We are not so rare after all. Global Genes' Rare Patient Advocacy Summit was a very rewarding experience.
I truly believe that God has sent angels from heaven to help parents and caregivers for rare disease patients. Every team member from Global Genes is an angel from heaven on earth. Thank you for your dedication, hard work and commitment to the rare disease patient community.
When someone is diagnosed with a rare disease, I always suggest Global Genes as their first stop (on the web) and their go-to conference (Rare Patient Advocacy Summit)! The Global Genes toolkits are invaluable for patients, caregivers, advocates and nonprofits alike and their annual advocacy conference has information for every stage, as well as the best networking in the rare disease space.
This incredible team, knows how to care. This event was hands down the best conference I have ever been to, and as a regular presenter at conferences and summits, I have seen many.
The thinking, energy, effort, honour and pride this event oozed, was magnificent. They engaged deeply with everyone present- from first time attendees, to biotech companies, pharmaceutical companies, corporate sponsors, technical professionals, family members, parents, children, advocates, supporters, presenters... there was so much for everyone present to gain inspiration, knowledge and actionable tools to enable positive change. This is a truly special community and it is being lead by an amazing group of people. There is so much hope, for a better world in Rare Disease.
I absolutely love this organization! Not only did I receive a response within 24 hours, the level of service is incredible! I would definitely work with them again :) and attend any upcoming events!
By connecting & mobilizing rare patients and advocates, Global Genes will change the landscape of how rare diseases are diagnosed, treated, and understood.
Thank you for your support of a travel scholarship! We were able to attend your RARE Patient Summit this September, 2017.
Through this event, we were able to learn more about the efforts of not only patient advocacy organizations, but also companies and the patients themselves. Being a virtual non-profit, we are so grateful to be able to learn and connect in person, something we could not have been able to afford to do without this scholarship. Through this attendance, we not only made new key relationships which we are pursuing this year, but we were also able to meet existing collaborators in person finally. The visit also produced a short takeaway which we posted on our Rare Genomics Facebook page and website . Thank you for helping us continue to work!
As a very new non-profit in the rare disease community ourselves, Global Genes has absolutely been a God-send for us.
When they say they advocate for the patient families and for the organizations who support them, it is true. Being part of the Alliance has helped us connect with many other smaller organizations and is a great platform for questions and ideas. On top of that, they have made personal introductions with companies to help us spread awareness to the issue we fight for.
As if that weren't enough, the educational events and annual meeting are absolutely top notch and help our community be better advocates but also help us build relationships which is so important in our day-to-day lives.
The Danny's Dose Alliance has grown and learned so much in just one year since we connected with Global Genes, we really can't say enough good things about this organization and all the hard work they do.
I had the chance to volunteer at a Global Genes summit this summer and I have to say it was an amazing experience. The entire Global Genes team was amazing to work with, and you could tell they were all passionate about what they do. Hearing all the stories and journeys that people have experience was very humbling. I am honored that I got to be a part of such a great event.
Global Genes has worked together with our non profit Narcolepsy Network for several years now. They put together wonderful and informative Narcolepsy meetups in different cities all over the country. These meetups are mini one day conferences for people with narcolepsy and their loved ones. The conferences are very well organized with great presenters, a dinner the night before and some break out sessions as well. I have enjoyed the Global Genes summit for several years now as well as the gala at the end. Everyone at Global Genes is warm, friendly and very dedicated.
Global Genes was instrumental in moving helping my family after our young daughter was diagnosed with a rare disease. Kendall, Nicole, Amy and the whole team not only supported us during our most difficult of times - but they encouraged us to start a foundation, connect families and grow the prevalence of our disease. When our daughter was diagnosed, we knew of just 20 patients world-wide. Through advocacy and science, we were able to start a foundation, fund research and build a community of over 100 patient families. Global Genes has made an impact on our rare, genetic disease and the lives of so many kids with rare diseases. The Global Genes team is a member of our family, we love them and are forever grateful for picking us up, motivating progress and always being there for every member of our community. To describe these advocates as "great" is an understatement. The community created has quite literally changed the world and is saving lives every single day.
Global Genes is the leading advocate for all Rare Diseases.
Having a rare disease myself and raising a daughter with one has been challenging.
Our passion for spreading awareness happened shortly after losing 2 sons to a rare disease.
We didn’t know what to do or where to start. We were blessed to be introduced to Global Genes and shared with them our interest in forming our own foundation for our rare disease .
Global Genes took us by the hand and walked us step by step through the whole process. They were encouraging us all the way and excited to be in our corner cheering us on.
We still go to them with all our needs and they always welcome us with open arms.
They helped us with our first conference which was a huge success!!! Thank you Global Genes!!!!
What they do is amazing, they show love and support to the whole rare Disease Community.
We love you Global Genes
This organization is amazing! They have helped me so much understand this community. They have so many resources. I wouldn't be able to do what I do without them.
As a mother to a child with a rare disease & president of Dyskeratosis Congenita Outreach, Inc. my relationship with Global Genes in priceless. The conferences afford opportunity to learn, grow, connect, and find that though we are rare we are not unique in our challenges. It is empowering being connected amongst the rare disease village, knowing we are not alone in this journey. Thank you GG for all you do!
We are incredibly fortunate to have Global Genes as a reliable and trusted resource for those of us who work in patient advocacy. We have worked with Global Genes in the past to help us identify sites/locations for our patient meetings. We have also partnered to conduct and distribute webinars for educational purposes. Finally, we have partnered with Global Genes to support Rare Disease Day activities. We have plans in place for future collaborations as well. Thank you Global Genes for all you do!
Global Genes is an incredible nonprofit! They have helped us navigate our daughter's rare disease, taught us more about what it means to be an advocate, and welcomed us with open arms. This organization not only encompasses all you want to see in a nonprofit, but it surrounds itself with all kinds of other companies that are also just as compassionate and top-notch! Their rare disease advocacy summit is something you don't want to miss!
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 an amazing organization and I am so glad I have found them! I have 2 rare diseases and this organization has been always willing to help me with anything I needed! I have called several times with questions and have always been given an answer and support. Thank you Global Genes!
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.