Most Recent Supporters

Based out of Sydney, Australia

Given that about 5% of the children born in Australia have congenital abnormalities and genetic disorders CMRI wants to improve the health status of these children by developing novel cures for these conditions through research.

Based out of the United Kingdom

At Congenica we’re in the business of changing lives for the better. We are a digital health company enabling genomic medicine with the world-leading Clinical Decision Support platform for clinical use for the rapid analysis and interpretation of genomic data.

Nashville, TN

The heart of our mission is to find the amazing souls that breathe life into our communities.

Starting in the United States now expanded to Canada, United Kingdom, Germany, Italy, France, and Spain.

Rare Patient Voice empowers patients and caregivers to share their voices with researchers and companies developing products, devices, and treatments to improve lives.

 Based out of Arkansas.

As caregivers ourselves, we set out to help simplify the complexities of the medical world for parents and caregivers. Regardless of your child’s age or medical situation, keeping track of everything is hard. We built mejo to help keep your child’s medical and care information beautifully organized, tailored to your needs, and easy to share. Our mission is our tagline - 'putting me back in medicine'.

  Based out of Phoenix, AZ

Megan is a writer and caregiver for her identical twin girls. When they were diagnosed with a rare genetic disease she shifted from mommy blogging to advocacy, even changing careers. She aims to uplift other moms with chronically ill children and bring joy and laughter in the midst of the grief and fear this life often brings.

Based out of Valencia, CA 

Our Mission statement is straightforward. Project Sebastian is a hub of Information, education, and compassion. We will devote the time and energy necessary to educate, advocate, and provide support to fight all rare diseases. We also feel very strongly about connecting those in need that are suffering from all rare diseases. We will provide support groups for those wanting to discuss, share and connect with others going through the rare disease journey.

  Based out Henderson, NV

Patient Worthy is an online publication that provides relevant information to rare disease patients, caregivers and advocates alike. Through education, awareness and a touch of humor, our goal is to inspire those in the rare disease community to tackle their chronic conditions, armed with the knowledge that they are not alone in their fight. 

  Based out of the United Kingdom

Support our mission At Beacon, we want to ensure that no one walks their rare journey alone. To achieve this, rare diseases must be viewed under one, united umbrella by patient groups, researchers, and policymakers alike. Our work encourages patient organizations to work together for the benefit of all rare conditions.

Based out of Charterhouse Square, London 

Genomics England is a British company set up and owned by the United Kingdom Department of Health and Social Care to run the 100,000 Genomes Project. The project aimed in 2014 to sequence 100,000 genomes from NHS patients with a rare disease and their families, and patients with cancer. An infectious disease strand is being led by Public Health England.

Locations in Delaware, Florida, New Jersey, Pennsylvania

  We are the embodiment of the hope and healing they seek in their times of need. Every day and with every interaction, each of us sets the stage for their experience.

Based out of London, United Kingdom

Founded in 1826 in the heart of London, UCL is London's leading multidisciplinary university, with more than 16,000 staff and 50,000 students from over 150 different countries.

 Alford, Aberdeensire

Rare Revolution Magazine's vision is a world in which people within the rare diseases community are empowered and informed. Where those affected by rare disease can have a voice and a community. Where rare disease collaboration benefits all.

Seattle, WA

As a new parent of a child with a rare genetic syndrome, I was lost. There was no guide. There was no rulebook. This was not what I had imagined.  As I navigated my way through this new reality and through the isolation I was feeling, I realized something that should have been simple but was not. A truth that had always been there, but that I had lost sight of for a time - I am not alone.

And neither are you.

These are the stories of my family, and of families like ours. These are the stories of how we have persevered, bonded, and grown. These are the stories of children who have been told that they cannot, and that have proved the world wrong.

Based out of Toronto, Canada.

Richmond, Virginia

 Twin mom, rare mom, heart mom, amateur genetics, and relentless advocate. In 2021 my son was diagnosed with Warsaw Breakage Syndrome and at the time there were less than 25 documented cases worldwide. During the short time we have been on this journey I have found that the best resources and tips have come from caregivers walking a similar journey within the rare and disability communities. The doctors, therapists, case workers, service facilitators often didn't even know about resources I would tell them about that I had found from another parent! I am passionate believer in knowledge is power and sharing knowledge empowers us all. I have been curating a resource list to share with families, friends, & professionals near and far to spread awareness about all of the amazing organizations and services that are out there.  

London, England

With our initiatives and current work, we hope to bring patients and people’s perspective to the various stakeholders involved in healthcare decisions by better understanding quality of life of those living with the conditions, their families, treatment options and satisfaction, patient journey and adherence.

Every year, we engage with thousands of patients and their families across the globe. We put patients and key healthcare stakeholders at the core of our research bringing together the patient voice and the healthcare professionals' perspective to make a small but significant difference for research and for patients. We are also proud to collaborate with international support groups/patients' associations helping to raise awareness on different diseases. We help students and academic researchers with their research too.

We look forward to welcoming new supporters to our Raging Raymond Foundation family!

As always, we hope to continue to inspire and make a difference in the community.