Global Genes

Global Genes Join the Hope movement! 1 in 10 people are affected by rare disease. 7,000 different rare diseases exist - 95% have no treatments. www.globalgenes.org

Global Genes™ is a leading rare and genetic disease patient advocacy organization. The Foundation’s mission is to unify the international rare and genetic disease community by providing connections and resources to ease the burdens of affected patients and their families. Recognized worldwide by the Blue Denim Genes Ribbon™, Global Genes™ unites experts, advocates and patients of all ages to stand together in hope for treatments and cures for the estimated 7,000 rare and genetic diseases that impact approximately 30 million Americans and over 250 million people worldwide. For more information, visit http://globalgenes.org/.

Mission: Global Genes™ is a leading rare disease patient advocacy organization. The Foundation’s mission is to unify the international rare disease community by providing connections and resources to ease the burdens of affected patients and their families. Recognized worldwide by the Blue Denim Genes Ribbon™, Global Genes unites experts, advocates and patients of all ages to stand together in hope for treatments and cures for the estimated 7,000 rare and diseases that impact approximately 30 million Americans and over 350 million people worldwide. For more information, visit http://globalgenes.org/.

Operating as usual

Easy listening: Hear more from one of our #2020GGSummit speakers Timothy Yu as he sits down with RARE Cast to discuss hi...
10/03/2020
Industrializing Individual Therapies for People with Rare Conditions

Easy listening: Hear more from one of our #2020GGSummit speakers Timothy Yu as he sits down with RARE Cast to discuss his personal rare disease story and his thoughts on individualized therapies for rare genetic diseases.

#RARECast #CareAboutRare #rarediseases #genetherapy #chronicillness #hope #rarediseaseadvocacy #GlobalGenes

It began as a Facebook post for someone looking for help getting a child with a rare neurological condition whole genome sequencing. It resulted, though, in groundbreaking work by Timothy Yu, a neurologist and attending physician in the Division of Genetics and Genomics at Boston Children’s Hospit...

Let's Talk Mental Health. Join us for a special film screening in honor of World Mental Health Day on Oct. 10. http://bi...
10/02/2020

Let's Talk Mental Health. Join us for a special film screening in honor of World Mental Health Day on Oct. 10. http://bit.ly/LetsTalkMHEvent

In partnership with BloodStream Media, NAMI (National Alliance on Mental Illness), The Mighty, and The Disorder Channel.

#WorldMentalHealthDay #raredisease #CareAboutRare #hope #GlobalGenes

The Continuity of Care RARE Patient Impact Grant is now accepting applications! If you are a RARE Foundation Alliance Me...
10/01/2020
Continuity of Care RARE Patient Impact Grant - Global Genes

The Continuity of Care RARE Patient Impact Grant is now accepting applications! If you are a RARE Foundation Alliance Member and your community has been facing hardship due to COVID-19, apply to receive support.

#COVID19 #raredisease #chronicillness #hope #rarediseaseadvocacy #CareAboutRare #rarediseaseawareness #GlobalGenes

Happy Inspiration Wednesday! Here's your humpday reminder to hang in there 💙
09/30/2020

Happy Inspiration Wednesday! Here's your humpday reminder to hang in there 💙

Today is #RareCancerDay. Join us in honoring all of the patients, families, and organizations like The Fibrolamellar Can...
09/30/2020
Rare Leader: John Hopper, President, Fibrolamellar Cancer Foundation - Global Genes

Today is #RareCancerDay. Join us in honoring all of the patients, families, and organizations like The Fibrolamellar Cancer Foundation who are working to advocate and fight for a cure for rare cancers.

#raredisease #chronicillness #hope #rarediseaseadvocacy #CareAboutRare #rarediseaseawareness #GlobalGenes

The BasicsName: John Hopper Title: President Organization: Fibrolamellar Cancer Foundation Social Media Links: Disease focus: Fibrolamellar carcinoma is a rare liver cancer that usually occurs in adolescents and young adults who have no history of liver disease. Patients typically present with sympt...

Global Genes's cover photo
09/30/2020

Global Genes's cover photo

We're still thinking about some of our favorite sessions from Global Genes LIVE! What was your favorite moment from this...
09/29/2020

We're still thinking about some of our favorite sessions from Global Genes LIVE! What was your favorite moment from this year's #2020GGSummit ?

#raredisease #chronicillness #hope #rarediseaseadvocacy #CareAboutRare #rarediseaseawareness #GlobalGenes

A new study in the finds that nearly 75 percent of rare disease patients could be at high risk for re-identification in ...
09/29/2020
Protecting Privacy when Posting to Rare Disease Forums - Global Genes

A new study in the finds that nearly 75 percent of rare disease patients could be at high risk for re-identification in healthcare datasets when sharing their stories online. Read more here!

#raredisease #chronicillness #hope #rarediseaseadvocacy #CareAboutRare #rarediseaseawareness #GlobalGenes

People with rare diseases are often willing to share their stories and details about their conditions. They recognize doing so may not only have therapeutic benefits for themselves, but also help others, and could add to a pool of data needed to accelerate diagnoses and the development of treatments...

Join us in attending Cures Within Reach virtual Fall patient education events: "How Patients Impact the 505b2 Regulatory...
09/27/2020
Cures Within Reach - GHRA 2020 - Patient Education

Join us in attending Cures Within Reach virtual Fall patient education events: "How Patients Impact the 505b2 Regulatory Process" and "Repurposing for #Pediatrics." Use promo code CWRglobalgenes2020 for up to 20 free registrations for patients and caregivers.

Join us for our virtual Fall 2020 patient education events to help honor these amazing organizations. Register for just one event, or join us for both events at a discounted rate! 

Thank you so much to everyone who experienced Global Genes LIVE! with us these past 2 weeks. The resiliency, camaraderie...
09/26/2020

Thank you so much to everyone who experienced Global Genes LIVE! with us these past 2 weeks. The resiliency, camaraderie, and positive attitude of the rare disease community will always be inspiring. #2020GGSummit

#raredisease #chronicillness #hope #rarediseaseadvocacy #CareAboutRare #rarediseaseawareness #GlobalGenes

Today is the last day of Global Genes LIVE! We have had a blast engaging with you all, and we're so excited for you to j...
09/25/2020
Global Genes LIVE! - Global Genes

Today is the last day of Global Genes LIVE! We have had a blast engaging with you all, and we're so excited for you to join us for a final day of inspiration, resilience, and changemaking. Tune in at 12pm ET for our final sessions, you won't want to miss it. #2020GGSummit

A two-week long interactive and educational online event, featuring meet-ups, workshops and performances September 14-25, 2020.

Thank you to all of today's #2020GGSummit attendees! Don't miss out on the last day of Global Genes LIVE! tomorrow at 12...
09/24/2020

Thank you to all of today's #2020GGSummit attendees! Don't miss out on the last day of Global Genes LIVE! tomorrow at 12pm ET. Hear from speakers Ryan Taft, Linda Wade, and Global Genes' own Parvathy Krishnan and Kimberly Haugstad as we discuss the importance of hope and unity during uncertainty. https://globalgenes.org/event/live/

09/24/2020
Beyond Scylla and Charybdis: Progress and Promise for Helping Rare Disease Patients Avoid the Diagnostic Odyssey and Get the Treatments They Need

Want to learn more about making progress for rare disease patients? Introducing part 1 of our 3 part webinar series in partner with Evidera, Child Neurology Foundation, and NAMCP. "Beyond Scylla and Charybdis: Progress and Promise for Helping Rare Disease Patients Avoid the Diagnostic Odyssey and Get the Treatments They Need." Click to learn more!

#raredisease #chronicillness #hope #rarediseaseadvocacy #CareAboutRare #rarediseaseawareness #GlobalGenes

Tuesday, October 06, 2020 at 10:00 AM Eastern Daylight Time.

Who else is excited for tonight's #2020GGSummit activity? Tune in right now to "Reflections on Building Successful Colla...
09/23/2020

Who else is excited for tonight's #2020GGSummit activity? Tune in right now to "Reflections on Building Successful Collaborations Between Advocates and Researchers" to hear stories of an incredible #raredisease partnership between Debra Melikian and Dr. Jason Sicklick, featuring our own Kimberly Haugstad! 💙 https://globalgenes.org/event/live/

#chronicillness #hope #rarediseaseadvocacy #CareAboutRare #rarediseaseawareness #GlobalGenes

Thank you to everyone who tuned into #2020GGSummit today! We'll see you tomorrow for our first session of the day tomorr...
09/23/2020

Thank you to everyone who tuned into #2020GGSummit today! We'll see you tomorrow for our first session of the day tomorrow at 12pm ET "Be Heard: Patient Perspectives in Novel Therapeutics Value-Based Discussions." https://globalgenes.org/event/live/

09/23/2020
Global Genes LIVE! A RARE Patient Advocacy (un)Summit

Want to rewatch any of this week's #2020GGSummit sessions? Head over to your virtual event guide to access all the recordings from this week! https://event.crowdcompass.com/globalgeneslive/activities?date=2020-09-23&displayTime=local

Join us for a variety of interactive and educational online events, meet-ups, workshops and performances September 15-25, 2020 at Global Genes LIVE! A RARE Patient Advocacy (un)Summit. This two-week event will provide members of the rare disease community, stakeholders, and allies with opportunities...

Today's #2020GGSummit theme is all about #genetherapy. Can't wait for you all to join us for our first session: How Indi...
09/23/2020

Today's #2020GGSummit theme is all about #genetherapy. Can't wait for you all to join us for our first session: How Individualized Therapies Are Becoming a Reality. Head over to your event guide to tune in right now! https://globalgenes.org/event/live/

Learn more about María Luisa Mendiola, founder of MIGA Swimwear and featured speaker during this Friday's #2020GGSummit ...
09/23/2020
Turning my secret into my passion: Jeune Syndrome - Global Genes

Learn more about María Luisa Mendiola, founder of MIGA Swimwear and featured speaker during this Friday's #2020GGSummit session "The Power of Human Connections and Resilient Communities" through her intimate personal story.

#raredisease #chronicillness #hope #rarediseaseadvocacy #CareAboutRare #rarediseaseawareness #GlobalGenes

Founder of the inclusive swimwear brand MIGA Swimwear, María Luisa Mendiola tells her story of turning her biggest insecurity into a passion and a buisness.

Join us for a live reading of Claudia Zylberberg's "You’re Full of Genes" and experience a night of family fun and genet...
09/22/2020
You're full of genes! – Just another WordPress site

Join us for a live reading of Claudia Zylberberg's "You’re Full of Genes" and experience a night of family fun and genetic exploration- starting right now! #2020GGSummit

Did you know your body is made up of millions and millions and billions and billions and trillions and trillions of cells, and that each one of these cells contains thousands and thousands of genes? It’s true!

Today's first Global Genes LIVE! session, 'From Data to Decisions, Leveraging Genetic Data Beyond a Diagnosis,' starts r...
09/22/2020

Today's first Global Genes LIVE! session, 'From Data to Decisions, Leveraging Genetic Data Beyond a Diagnosis,' starts right now! Don't miss out on hearing from expert speakers today like Dr. Sharlene Brown and Amy Brin. https://globalgenes.org/event/live/

#2020GGSummit #raredisease #chronicillness #hope #rarediseaseadvocacy #CareAboutRare #rarediseaseawareness #GlobalGenes

Today's #2020GGSummit activity is yoga with Katie B! Connect with your inner self and join us at 7pm ET.
09/21/2020
Global Genes LIVE! - Global Genes

Today's #2020GGSummit activity is yoga with Katie B! Connect with your inner self and join us at 7pm ET.

A two-week long interactive and educational online event, featuring meet-ups, workshops and performances September 14-25, 2020.

Ready for week 2 of Global Genes LIVE? Keynote session "Harnessing the Power of Genomic Frontiers" starts right now! Hea...
09/21/2020
Global Genes LIVE! - Global Genes

Ready for week 2 of Global Genes LIVE? Keynote session "Harnessing the Power of Genomic Frontiers" starts right now! Head over to your virtual event guide now and tune in.

A two-week long interactive and educational online event, featuring meet-ups, workshops and performances September 14-25, 2020.

09/21/2020

Hold tight folks! We're getting a new live stream up quick!

You can nominate your own RARE Champion of Hope today. Help give your heroes in rare disease research, industry, and mor...
09/21/2020
Nominate a RARE Champion of Hope - Global Genes

You can nominate your own RARE Champion of Hope today. Help give your heroes in rare disease research, industry, and more the recognition they deserve. Nominations close Sept. 25!

#2020COH #raredisease #chronicillness #hope #rarediseaseadvocacy #CareAboutRare #rarediseaseawareness #GlobalGenes

Tonight, hear the inspiring stories and performances of five rare musicians at A Celebration of Hope Fundraiser. From ra...
09/20/2020
Global Genes LIVE! - Global Genes

Tonight, hear the inspiring stories and performances of five rare musicians at A Celebration of Hope Fundraiser. From rare rocker Pete Dankleson, to pop artist and song writer Cameron James, this exciting event goes LIVE at 8pm ET. Don't miss out!

#2020GGSummit #raredisease #chronicillness #hope #rarediseaseadvocacy #CareAboutRare #rarediseaseawareness #GlobalGenes

A two-week long interactive and educational online event, featuring meet-ups, workshops and performances September 14-25, 2020.

Who’s ready for Week 2 of of Global Genes LIVE?! Learn more about topics like Mapping Patient Inclusion in Drug Developm...
09/19/2020
Global Genes LIVE! - Global Genes

Who’s ready for Week 2 of of Global Genes LIVE?! Learn more about topics like Mapping Patient Inclusion in Drug Development, with expert speakers like Sheridan Carrington. See you there! Use code: GGLIVECOMP for a free registration.

A two-week long interactive and educational online event, featuring meet-ups, workshops and performances September 14-25, 2020.

09/19/2020

Discover the inspiring stories of some of our most talented rare disease community members. Tune in for our Celebration of Hope Fundraiser tomorrow at 8pm ET. Hosted by Brandon Farbstein and featuring artists like Kris Allen and Cameron James, you won't want to miss this. Use code: GGLIVECOMP for a free registration. 💙https://globalgenes.org/event/live/

#2020GGSummit #raredisease #chronicillness #hope #rarediseaseadvocacy #CareAboutRare #rarediseaseawareness #GlobalGenes

Hereditary angioedema (HAE) patients may soon see positive results from Ionis Pharmaceuticals' new antisense therapy. Th...
09/18/2020
NEMJ Publishes Positive Results of Ionis’ Experimental Antisense Therapy for HAE - Global Genes

Hereditary angioedema (HAE) patients may soon see positive results from Ionis Pharmaceuticals' new antisense therapy. This week in rare drug development, read more below.

Rare Daily Staff Ionis Pharmaceuticals reported positive results from a compassionate-use study of its experimental antisense therapy for patients living with severe bradykinin-mediated angioedema The New England Journal of Medicine. Hereditary angioedema (HAE) is a rare autosomal dominant disease t...

A great resource for the Duchenne community! #careaboutrare
09/18/2020

A great resource for the Duchenne community! #careaboutrare

Join Dr. Paolo Bettica for an update about the Italfarmaco Givinostat development program. Dr. Bettica will review progress in the Italfarmaco studies about Givinostat in Duchenne and Becker Muscular Dystrophy. Sign up for the webinar to learn the latest updates and to ask your questions about the program.
https://us02web.zoom.us/webinar/register/WN_v2CIecfVRCak_8DAEsXQzA

The final night of RARE Watch parties in partner with The Disorder Channel at the #2020GGSummit starts tonight at 8:30pm...
09/18/2020
Films — DISORDER: The Rare Disease Film Festival

The final night of RARE Watch parties in partner with The Disorder Channel at the #2020GGSummit starts tonight at 8:30pm ET. Tune in for a final evening of films, focusing on working to get a diagnosis for your rare disease.

To watch these films and more like them after the event, click here! https://www.rarediseasefilmfestival.com/work

#raredisease #chronicillness #hope #rarediseaseadvocacy #CareAboutRare #rarediseaseawareness #GlobalGenes

The world's largest collection of rare disease films. Movies on fatal genetic disorders. Documentaries and narrative films.

Missed last night's RARE Watch parties? Night 2 is coming at you LIVE at 8:30pm ET, featuring films that focus on the si...
09/17/2020

Missed last night's RARE Watch parties? Night 2 is coming at you LIVE at 8:30pm ET, featuring films that focus on the sibling experience in rare disease. Plus, Madison McLaughlin takes over our Instagram (@GlobalGenes) for a day! You won't want to miss it. https://globalgenes.org/event/live/

#2020GGSummit #raredisease #chronicillness #hope #rarediseaseadvocacy #CareAboutRare #rarediseaseawareness #GlobalGenes

Night 1 of our #2020GGSummit RARE Watch Parties kicks off tonight! Featuring 4 films from The Disorder Channel, tonight ...
09/16/2020

Night 1 of our #2020GGSummit RARE Watch Parties kicks off tonight! Featuring 4 films from The Disorder Channel, tonight is centered around the diagnostic odyssey and courage of rare disease patients. Grab some popcorn and tune in at 8:30pm ET. https://globalgenes.org/event/live/

To watch these films and more like them after the event, click here! https://www.thedisordercollection.com/

#raredisease #chronicillness #hope #rarediseaseadvocacy #CareAboutRare #rarediseaseawareness #GlobalGenes

Address

28 Argonaut Ste 150
Aliso Viejo, CA
92656

Opening Hours

Monday 08:00 - 17:00
Tuesday 08:00 - 17:00
Wednesday 08:00 - 17:00
Thursday 08:00 - 17:00
Friday 08:00 - 17:00

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(949) 248-7273

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Our Mission

At Global Genes our mission is to eliminate the challenges of rare disease faced by 350 million people worldwide. See how you can get involved with the RARE Community, here: https://globalgenes.org/

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Comments

Did you all know that you could pick Global Genes as your charity of choice as a Prefered customer through One Hope wines? I just realized this and set them as my charity! Drinking wine and doing good...it’s a win win! https://www.onehopewine.com/shop/
Does anyone have a letter of recommendation they wrote for a postdoc they could share with me?
I have been following so many amazing stories. When I get too overwhelmed with parenting I rewatch the live feeds later. Thank you all for all that you have done for this event!! I received my bag today as well and will proudly wear my T-shirt and raise awareness. Never did I think....we would be parents of such “rare” children, but I knew they would hold my heart forever. Thank you Global Genes family. Xoxo
Hi Y'all!! I don't know about you guys, but I am getting really excited for this talk and networking later!!!:)
#ggsummit2020 check out my stripes... I'm a zebra ! 🖤💜
Wishing we were together this week in sunny southern California but loving the chance to connect virtually! What are you doing to make the MOST of Global Genes LIVE?
Kleefstra Syndrome France
Hi there. First, let me say thank you for including me. If you have never known anyone in need of an organ transplant to live, then it may be hard to relate. But for us, this is an every day wait for a liver transplant for my husband who has late stage cirrhosis from PSC (Primary Sclerosing Cholangitis), a rare autoimmune disorder. Since our country has an "Opt-In" organ donor system (meaning that you have to indicate informed consent on your driver's license or donor registry), the United States has far less people willing to donate their organs should they be eligible leading to a long waitlist where many people die before getting an organ. By the way, the chances of being an actual donor are very slim. Since we can't even get people to consider others by wearing a mask during a pandemic, I doubt the U.S. will ever switch to a system like Singapore, where not only do they have "presumed consent" but if you decide to "opt out" then if YOU ever need an organ, you will be placed at a lower priority. This makes sense. You receive when you are willing to give. While I alone cannot change an entire system, I am doing everything I can to amend the liver transplant scoring system (called MELD score) so that people with my husband's rare autoimmune disease can get to a higher priority on the waitlist before developing life threatening complications. Thank you for reading, signing, and sharing!
All dressed up, and no place to go? Heck no, it's Comic-Con week, and the Myositis Warrior™ had planned (pre-Covid-19) on making a fashion statement this year! So I'm wearing my costume for the virtual event anyway. Outlandish? Yes. But I did go to the real deal last year, in fact, I consider that to be the day Myositis Warrior™ was born. And yes, I did wear a cape last year, but this is a great improvement. Did I have people ask me who/what I was? Yes. But I was memorable, and I taught a few people how to say the word Myositis! A crazy way for me to cope with my chronic rare disease. You don't have to wear a cape--but I think it's fun. And when in San Diego...Comic-Con is (usually) the place to see and be seen. Advocacy and awareness! Anyone in the Global Genes community want to join me next year? Special shoutout to designer and costume creator Jewel Roho and photographer Curt Wells. Couldn't do this without them! #myositiswarrior
Thank you Global Genes for all the incredible work you do, especially during this time. We are very excited to share an important campaign and fund just initiated today. Please help spread the word and do what you can to #IStayHomeForRare. Living in the Light has already kicked in $10.8 k and is looking for matching donors and lead sponsors to give this the momentum it deserves. Join us in solidarity with those staying home protecting the lives of children, family members, and friends living with rare diseases. Visit:
what and how friedreich ataxia cure in view genetic?
Proud of my Global Genes match speaking at the Annual Stritch Awards dinner on behalf of her classmates, Deborah Rose, MD Candidate, 2020, Loyola University Chicago, Stritch School of Medicine. #globalgenes