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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: - Undiagnosed Patient Program - RARE Toolkits - RARE Webinar Series - RARE Meet Ups - RARE Facts & Lists - Corporate & Foundation Alliances - Patient Advocates

Community Stories

48 Stories from Volunteers, Donors & Supporters

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.

2

Volunteer

Rating: 5

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".

Previous Stories
1

Volunteer

Rating: 5

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.