Year in Review
We’re taking some time to reflect on everything we've accomplished this year alongside you, our community. Join us as we retrace our steps.
Thanks for everything. We’re so glad you’re here.
In 2021, AllStripes reached:
With gratitude, some highlights
We're grateful for everything we were able to do in 2021.
United Kingdom launch
In February, we celebrated our first major expansion outside of North America to rare disease patients and caregivers in the United Kingdom. We were thrilled to welcome patients and caregivers based in England, Scotland, Northern Ireland and Wales to join the AllStripes platform, receive their medical records and contribute to treatment research from home.
This expansion represented a significant milestone for us as a company and for the rare disease community. When it comes to rare disease, every patient’s experience is critical to better understanding each condition. We are working on expanding to additional countries in the future.
Public Benefit Corporation
AllStripes officially reincorporated as a Public Benefit Corporation (PBC) in the summer of 2021. A benefit corporation is a for-profit company that weighs social good in its business decision-making. At AllStripes, our mission is to unlock new treatments for people affected by rare disease. As a PBC, we committed to driving forward research for the rare disease community, creating technology to break down research silos and embodying our mission and values in all of our operations. As part of our PBC structure, AllStripes advocates for the importance of real-world evidence in the development of treatments and is continuing to build tools that make research more inclusive for the global rare disease community.
Series B funding
In August, we announced that we raised $50 million in Series B financing to expand our impact and continue building the leading research platform in rare disease. These funds will enable us to launch 100 new rare disease research programs, grow our global reach to include more communities and develop new features for patients, families and our research partners. "This investment will allow us to better support the rare disease community, where each person’s experience is essential to understanding disease progression — ultimately leading to new treatments for rare disease patients around the globe," said Nancy Yu, our CEO and Co-founder.
$50 million to transform rare disease treatment
We celebrated this on social media alongside our Ambassadors, patient organization partners, research partners, investors and the rare disease community as a whole. The announcement was featured in a number of media outlets.
Epidemiology and access to research for participants in a rare disease real-world data research platform
Demonstrated our real-world data’s ability to inform study site selection and recruitment efforts. These factors have a huge impact on patients’ ability to participate in urgent research.
Presented at the National Organization for Rare Disorders (NORD) Breakthrough Summit.
Genetic testing patterns in SLC6A1-related disorders
Examined our real-world data to assess the genetic testing and clinical history of patients with SLC6A1-related disorders. This highlights the need for increased access to genetic testing.
Presented at the American Epilepsy Society’s Annual Meeting.
Early symptomatic onset of patients with PDCD10-related cerebral cavernous malformations
Added to the limited knowledge surrounding disease presentation of CCM3 by performing a retrospective analysis of patients via our real-world data platform. This information can help physicians recognize CCM3 earlier, which can lead to earlier monitoring and intervention.
Presented at the National Society of Genetic Counselors (NSGC) 40th Annual Conference.
Maria, founder of Morquio Community
Maria is an arts-and-crafts aficionado who lives in Hawai’i with her family. Earlier this year, she was one of 13 Ambassadors we sponsored to attend Global Genes, one of the world’s largest gatherings for the rare community. Along with her fellow Ambassadors, Maria shared highlights from the event using the hashtag #AllStripesAmbassador. She also participated in the pilot of our “as-told-to” Ambassador Stories — where members of the rare disease community tell their own stories, in their own words. “Even a 5-year-old with Morquio can teach another 5-year-old who doesn’t have Morquio something,” Maria shared. To learn more about Maria and Morquio Community, check out her full Ambassador Story.
Rare Disease Day 2021
To observe Rare Disease Day on February 28, we conducted a week-long social media campaign to raise awareness of important rare disease facts and rare disease realities through Ambassador Stories. We also sent our new T-shirt designs to all of our Ambassadors, inviting them to share photos on social media with the hashtag #ShowYourStripes. Over at the Instagram for Option B, an organization that addresses a range of life-changing challenges, we participated in a takeover to share information about rare diseases and AllStripes’ mission.
Thank you to all those who participated in this year’s campaign. We can’t wait to show you what we have in store for 2022!
Founded in 2020 by a group of parents, the IDefine team rallied the Kleefstra syndrome community together to participate in the AllStripes Kleefstra syndrome research program — and reached their recruitment goal of 50 research participants in just 2 months. They’ve continued pushing for a sizable cohort to create the most robust data possible for Kleefstra syndrome research and characterization.
Fittingly, the year culminated in Geoff Rhyne, CEO of IDefine and father of Ella, receiving the RARE Rising Star award at Global Genes’ Rare Champion of Hope event. To learn more about IDefine’s crucial work, visit their site and follow them on social media.
‘Hi, My Mom Has PSP’
Sylvia and Mubina met at a conference put on by CurePSP, and this past summer, they spoke with us at AllStripes. Listen to our first-ever audio blog to hear their profound and practical advice for anyone facing a loved one’s diagnosis with a progressive disease like PSP. A full transcript is here.
Powering our product
Here’s just a few of the ways the engineering, product and operations teams enhanced our research platform in 2021.
The engineering team revamped in-app surveys, improving the user interface and adding new capabilities. This enables us to ask more powerful questions about patients’ experiences — and deliver more powerful answers back to the rare disease community.
Over at internal tools, the team built a status system to help process medical records faster. The sooner this happens, the sooner patients and caregivers can access their medical records and our research team can start gathering insights.
The operations team grew significantly in 2021, which meant the team was able to spearhead collecting and organizing 300,000+ medical records for over 600 patients across 50 rare condition communities.
Our research partnerships
This year, AllStripes collaborated with life science companies and academic researchers on real-world evidence studies, including: HemoShear Therapeutics, Inc., Orphan Disease Center at the University of Pennsylvania, Taysha Gene Therapies, Inc., UCB Biopharma SRL and Novartis Pharma AG. These joint research programs all aim to enhance clinical understandings of rare disease treatment research.
AllStripes and the University of Pennsylvania’s Orphan Disease Center are focused on clinical understanding of Lesch-Nyhan disease and Crigler Najjar syndrome type 1, with the goal of facilitating therapeutic discovery for both conditions. One of AllStripes’ most recent partnerships with HemoShear Therapeutics aims to gather real-world evidence on patients’ medical experience with serious metabolic diseases through the Journey to Understand MMA and PA (JUMP) study.
Growing the dream team
In 2021, the AllStripes team grew to 100+, a number that will increase in 2022. We’re on a mission, growing fast and embracing the distributed-work model with gusto.
“We get to help patients and caregivers understand the research and how their contribution helps, which is really rewarding. Even when things are hard, it’s easy to show up to work because I know the work I do every day is meaningful.”
"I have the privilege of engaging with patient and caregiver communities, which directly informs our work toward redefining what treatment development looks like."
"My job is to incorporate ideas and visions into a high-performing product that can transform rare disease research. Any and all progress toward our mission gives me immense satisfaction."
“I help meaningfully convey to life science companies how AllStripes empowers patient communities to actively participate in research — and how crucial patient engagement is to the success of research programs.”
“We are focused on protecting the rights and welfare of our research participants. We value the trust participants put in AllStripes, and they are at the heart of all our efforts.”
“There’s nothing more exciting than seeing the records I collect helping to power research that can make a direct impact on the rare disease community.”
“I feel honored to support our hiring teams attract, hire and retain amazing employees who will help unlock new treatments for people affected by rare disease.”
“Every day at AllStripes, I'm reminded of how rewarding it is to see the direct impact our research platform can have on patients and caregivers.”