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2017 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

59 Stories from Volunteers, Donors & Supporters

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!

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.

Volunteer

Rating: 5

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.

Eveline Honig van V.

Professional with expertise in this field

Rating: 5

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.

Luke R.

Client Served

Rating: 5

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.

Robyn

Client Served

Rating: 5

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
Robyn Deleon
CFUCDF

Volunteer

Rating: 5

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.

Katie162

Client Served

Rating: 5

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!

Client Served

Rating: 5

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!

MakaylaS1LY

Client Served

Rating: 5

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!

Frank R

Client Served

Rating: 5

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!

Tiffany63

Volunteer

Rating: 5

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!

Volunteer

Rating: 5

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.

Previous Stories

Volunteer

Rating: 5


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.

Volunteer

Rating: 5

Global Genes is a wonderful non profit. I am pleased to be a volunteer on their team. Keep up the great work!

Volunteer

Rating: 5

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.

Donor

Rating: 5

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!

1

General Member of the Public

Rating: 5

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

1 Tracy89

Client Served

Rating: 5

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!

General Member of the Public

Rating: 5

Great "place" to meet other parents of children with rare disorders! Great "place" to get info and stay connected!

Donor

Rating: 5

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.