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.
I LOVE GLOBAL GENES. They have provided amazing and unwavering support for the rare disease community for years. Their passion and imagination is unparalleled.
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!