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2018 Top-Rated Nonprofit

Global Genes®

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Nonprofit Overview

Causes: Health

Mission: Our mission is to eliminate the challenges of rare disease. We accomplish this by unifying the rare disease community, building awareness, providing connections and creating resources and collaborations.

Target demographics: The Rare Disease Community

Geographic areas served: National/Global

Programs: - RARE Toolkits - RARE Webinar - RARE Meet Ups - RARE Facts & Lists - Corporate & Foundation Alliances - Patient Advocates - RARE Patient Impact Grant

Community Stories

77 Stories from Volunteers, Donors & Supporters

1

Donor

Rating: 5

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!

1

Volunteer

Rating: 5

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.

1

Client Served

Rating: 5

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.

2

General Member of the Public

Rating: 5

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.

2 Nonprofitgirl

Volunteer

Rating: 5

Global Genes is the world's leading rare disease advocacy group. They give patients a voice.

2 Leah T.4

General Member of the Public

Rating: 5

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!

1

Professional with expertise in this field

Rating: 5

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.

1

Volunteer

Rating: 5

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!

1

Professional with expertise in this field

Rating: 5

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.

1

Client Served

Rating: 5

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.

Previous Stories
1

Donor

Rating: 5

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.

3

Client Served

Rating: 5

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.

1

Professional with expertise in this field

Rating: 5

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!!!

1

Client Served

Rating: 5

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.

1

Client Served

Rating: 5

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

1 Project Alive

Professional with expertise in this field

Rating: 5

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.

1

Professional with expertise in this field

Rating: 5

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.

1

Volunteer

Rating: 5

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!

1

Professional with expertise in this field

Rating: 5

By connecting & mobilizing rare patients and advocates, Global Genes will change the landscape of how rare diseases are diagnosed, treated, and understood.

2 Rare Genomics Institute

Professional with expertise in this field

Rating: 5

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!

2

Professional with expertise in this field

Rating: 5

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.