oneSMAvoice
Our newest onevoice community, oneSMAvoice empowers people impacted by spinal muscular atrophy.
Our web and mobile experiences unify rare disease populations around resources and community conversation. Key features include:
WHAT WE DO
We forge the connections that engage, unify, and amplify the voices of patients, advocates, and caregivers to inform and accelerate the development and commercialization of emerging treatments.
Rare is personal.
In the small, hard-to-reach communities that define rare disease groups, the stories and the connections they forge require a different approach. We specialize in three areas critical to the successful development and commercialization of treatments for rare diseases: collaboration, science, and technology. Our tech-forward approach centers on the development of online educational communities that provide curated resources and online community features for patients, advocates, and caregivers. When paired with our publication planning and scientific communications offerings, we provide unparalleled access to — and insight from — rare disease communities.
Our innovative approach
We offer three unique, interconnected solutions to build community connections:
DIGITAL EXPERIENCES
MEDICAL PUBLICATIONS
Customized rare disease medical publication programs that address the intricacies of publication planning in rare disease.
SCIENTIFIC COMMUNICATIONS
Our approach to scientific communications celebrates that rare patients, advocates, and caregivers are critical shapers of their rare disease ecosystem.
OUR WORK
rareIQ: Building Rare Communities
What does it take to build a sustainable patient community? This white paper outlines rareLife’s three-step, rare-focused approach.
oneSCDvoice
In partnership with the Sickle Cell Disease Association of America, oneSCDvoice empowers people impacted by sickle cell disease.
Booklet: A Guide to MPS IV
The “Morquio Syndrome: A Guide to Understanding MPS IV” booklet was designed and executed to support the information needs of people diagnosed with MPS IV and those who support their care.
Expert Opinion on Orphan Drugs
How many zebras are there, and where are they hiding in medical literature? A literature review of publications on rare diseases.
oneFAPvoice
Developed in partnership with Cancer Prevention Pharmaceuticals, oneFAPvoice is the first community that rareLife solutions created.
Future Medicine: Future Rare Diseases
‘Negative’ clinical trials in rare diseases and beyond: reclassification and potential solutions
National MPS Society Physician MasterClass
The National MPS Society Physician MasterClass was designed and executed to inspire up-and-coming medical geneticists.
oneAMYLOIDOSISvoice
In partnership with Amyloidosis Support Groups, oneAMYLOIDOSISvoice empowers people impacted by amyloidosis.
oneGRAVESvoice
In partnership with the Graves’ Disease and Thyroid Foundation, oneGRAVESvoice empowers people impacted by Graves’ disease and thyroid eye disease.
oneXLHvoice
In partnership with Ultragenyx Pharmaceutical, oneXLHvoice empowers people impacted by X-linked hypophosphatemia.
Clinical Trial Finder
Our proprietary Clinical Trial Finder, featured on selected onevoice sites, helps patients and caregivers find clinical trials based on tailored search criteria.
WHAT OUR CLIENTS AND MEMBERS ARE SAYING
CEO, rare disease pharmaceutical co.
I met rareLife solutions in their early startup stage; I was hooked from the start as they described their vision for “smarter rare disease drug development and commercialization” anchored by a technology solution intended to build community called onevoice. As a small rare disease company in the clinical development stage, we understand the power of the patient and caregiver community, so we felt the rareLife philosophy had hit the nail on the head. This could be disruptive, just like our potential drug in Phase 3 trials for familial adenomatous polyposis. So we were fortunate to be their flagship program, which is called FAPvoice. It went from nothing to hundreds of patients (in a very small rare disease) in a very short time. We immediately saw a positive impact on our relationship with the FAP community, our ability to query patients and KOLs, and even an unintended positive impact on our Phase 3 trial enrollment (word gets around on the grapevine). We continue to be inspired by rareLife’s commitment and dedication to their (and our) mission ever since.
Sickle cell disease advocate
This site amplifies the best of existing resources found across the internet – that can be mutually beneficial to content sites, particularly when a community is connected.
Healthcare provider, oneEDSvoice
It is important to have such a forum that provides high quality information AND interacts with patients.
Medical director, pharmaceutical co.
It’s an absolute pleasure to work with you guys. We’re so glad we found you. Honestly, forgive me the pun, it’s rare to find people this knowledgeable, this engaged, and this good.
Consultant to pharmaceutical co.
In each of the projects that I’ve been working, I have felt that I’ve been working with a very professional and accomplished group of people. In every exchange – be it email or in the meetings, they have been a pleasure to work with. It’s clear that they are also experienced in what they are doing and that made our work much more efficient to develop the outputs.
Working Group member, oneSCDvoice
I’m impressed with the quantity of information and the range of topics covered. Without a platform like oneSCDvoice, it would take hours to find this kind of information on sickle cell disease and trait – and then hours more to determine which sources are reliable and trustworthy.
Surgeon, key opinion leader
First of all, congratulations on an excellent manuscript. It’s so difficult to pull together disparate comments from umpteen individuals but you have done a great job. Consider this as my formal approval for publication.
Member, DuchenneXchange.org
Hello, I am a new member of this website which I stumbled upon by accident today when I was doing my weekly search. I think that this splendid website is a great idea and it feels amazing to be part of such a community.
Chief commercial officer, pharmaceutical co.
Our video has been well received. You and your team are superstars ????.
oneFAPvoice site user
It seems like it’s more of a close-knit community, which I was surprised about. The [Facebook] groups are pretty big and I can get lost in it. I don’t feel like that in …
oneFAPvoice.
EVP and COO, pharmaceutical co.
I’ve never seen anything like this, and I’ve been in the industry a long time.
Advocate, oneEDSvoice
Very excited to be a part of this and excited about the amount of information and the ‘holistic approach’ of including all types of sources and credible information … this will be very helpful to the patients.
Our clients and partners include:
OUR TEAM
Laura is a strategic thinker who leads the SciComm team to surpass client expectations. As the proud mom of a teenage daughter with a rare disease, Laura spends a lot of time picking up towels from the bathroom floor, just like most moms. When not working (or picking up towels) you may find Laura riding dressage, hiking, practicing yoga, or trying to finish that darn MBA.
Jeni is our Community Engagement Director. She has personal experience with rare disease and is passionate about helping people connect with others and with hard-to-find resources. She’s known as “the connector” by her friends, and she’s never met a stranger. Jeni is the proud mom of a tween daughter and loves cooking, photography, 80s music, mountain adventures, and trail running. She has an arts background, which is balanced with extensive experience in marketing, establishing and growing digital outreach, and engaging people across all forms of media.
Patti is Senior Director of Client Solutions for scientific communications and medical publications. She found her niche in Sci Comm because of its fast pace, challenging content, and demand for excellence. At rareLife, she finds that focusing on rare diseases and the hope for cures adds layers of meaning and motivation. When not at her desk, you’ll find Patti baking while listening to NPR, walking the shore with pups Tuxy and Jersey Girl, or planning the next “Family Fun Night” dance party with her husband, family, and friends.
Rob is a digital leader specializing in product management, user experience strategy, and new product development. In his spare time, he serves on the board of the Washington, DC chapter of the User Experience Professionals Association, runs trail ultramarathons, and builds structures out of cardboard with his 6-year-old daughter.
Justin is a technology leader with 25 years of experience in software development methodologies and technologies. His areas of expertise include large-scale, high-traffic applications built with the latest cloud-based toolsets. He also is the team’s resident expert on all things Star Wars, Pokemon, and The Grateful Dead.
Sarah is a utility player for rareLife’s community engagement team. She coordinates the working groups across our onevoice platforms and leads the team in trivia and poll development. She plays a large role in content curation and community outreach emails. Sarah has a background in allied health with a degree in occupational therapy. She has 18 years of experience in medical publishing — specifically with the peer review process, copyediting, and proofreading. When away from the office Sarah can be found outdoors either swimming, tinkering, or reading a book.
A data privacy geek by day, a chef by evening, and a psychology nerd by night, Priyanka is a lawyer and certified privacy professional steeped in GDPR, global compliance, and data strategy. She’s drafted more contracts than you’ve had slices of pizza and has over 10 years of experience negotiating agreements in technology transactions, information security and privacy, software licensing, and outsourcing.
Mukund is rareLife’s Director of Medical Affairs and principal medical writer. He holds a PhD in molecular biology, an MBA, and an ISMPP CMPP credential. His past work includes pharmaceutical industry drug discovery and medical communications. He is on the editorial board for 2 rare disease journals, is a Rotarian, has lived on 4 continents, loves to cook, and is the recipient of a Presidential Volunteer Service Award.
Aparna obtained a PhD in Pharmaceutics and holds CMPP and Lean Six Sigma Green Belt certifications. She has more than 5 years of experience in the medical writing industry with a focus on strategic publication planning and scientific communications using eLearning platforms. At rareLife, Aparna hopes to contribute to making scientific communications in the rare disease space more accessible to all stakeholders. In her free time, she enjoys reading and binge-watching teenage shows with her preteen daughter.
E.J. is a Client Solutions Director and communications specialist with more than 20 years’ experience in the scientific communications and healthcare information technology spaces. He brings strong project management, communications, and relationship-building skills into the rare community, delivering projects on time and on budget. When not on the front lines of the rare disease effort, he is usually found on the sideline of a soccer field cheering on his teenagers, running, hiking, watching his beloved Manchester United and FC Barcelona, and enjoying trips with his wife and kids to our great national parks.
Nadeem is a recognized expert in the pharmaceutical services sector. He has a background with the big four in strategy, M&A, business development, financial planning, financial reporting, auditing, accounting, and tax.
Melanie is the Office and Employee Solutions Manager for rareLife, supporting our distributed team members. She has over 20 years of experience in executive assistant/office management. Outside of rareLife, Melanie is vice president of the American Business Women’s Association – Nutmeg Chapter. In her spare time, she is an avid crafter, healthy living mentor/coach, and a creator of cakes and cupcakes.
Kagin is an innovative and driven accounting and FP&A professional with over 20 years of experience.
GET IN TOUCH
If you’re interested in learning more about how rareLife solutions can help you, let us know!