
About Rashmi Jain
Rashmi Jain is a biomedical engineering graduate whose career reflects a seamless blend of technical expertise and a passion for healthcare innovation. She began her professional journey organizing medical conferences, where she leveraged her skills to bring critical issues to light. Among these events, one focused on rare diseases profoundly shaped her path, igniting a lifelong commitment to advocating for an often overlooked community.
This transformative experience led Rashmi to dedicate her career to the rare disease space. She has since become a key figure in the field, working closely with the Rare Advocacy Movement (RAM). Her unwavering commitment culminated in the creation of the Rare360 program, a pioneering initiative, powered by RAM, that bridges critical gaps in market research for rare disease communities. As the Executive Director of Rare360, Rashmi is devoted to amplifying the voices of patients and caregivers, ensuring their perspectives influence meaningful advancements in research, policy, and advocacy.
Beyond her professional accomplishments, Rashmi is an avid gardener, an enthusiastic reader, and a creative writer, finding balance and inspiration through her personal passions.
A Discussion with Rashmi Jain
How does the Rare360 program work with RAM to ensure that rare disease patients have access to opportunities that truly benefit them?
The Rare360 program is built upon the principles that guide the Rare Advocacy Movement (RAM). RAM has cultivated a global community of over 400 million patients and their family members living with rare diseases. RAM’s expansive network provides Rare360 with the opportunity to function as a bridge between communities and meaningful opportunities.
At Rare360, we are deeply committed to safeguarding the best interests of rare disease patients and their families. Through RAM’s global network, we ensure that every opportunity—whether it’s participation in market research studies, advocacy programs, healthcare initiatives, etc.—is thoroughly vetted to align with the community’s needs and priorities.
Our mission goes beyond merely facilitating connections; it is rooted in fostering trust and delivering impact. We strive to amplify the voices of patients, caregivers and their families, spotlight the rare disease community’s challenges to key stakeholders, and provide access to solutions and resources that make a tangible difference. Rare360 is dedicated to protecting, empowering, and valuing the rare disease community at every step.
How does Rare360 ensure patient confidentiality is not compromised when collaborating with external organizations?
At Rare360, patient confidentiality is a cornerstone of our operations. We understand the immense responsibility of safeguarding sensitive information and have implemented robust measures to ensure that privacy is never compromised, even when collaborating with external organizations.
First and foremost, all collected data is stored on HIPAA-compliant servers reserved exclusively for RAM activities, ensuring the highest standards of security and privacy. To further safeguard patient anonymity, each project participant is assigned a unique ID. This ensures that no personally identifiable information (PII) is linked to any participant nor shared externally. Additionally, we have a strict policy of not sharing any PII with external collaborators. Instead, we focus on providing aggregated insights and anonymized data that serve the purpose of the designated research projects, while fully respecting the privacy of each participant.
Our commitment to confidentiality not only meets regulatory requirements but also respects the trust placed in us by the rare disease community. Trust is the cornerstone of all our work, and we continuously strive to maintain it through all of our program’s practices.
How do you evaluate whether a project aligns with the mission and values of the Rare360 program?
At Rare360, every project undergoes rigorous evaluation to ensure it aligns with RAM’s established mission and values, which center on advocating for and uplifting the rare disease community.
We begin by assessing whether the project respects the natural dynamics of the community. Any initiative that appears burdensome or fails to align with the unique needs and challenges faced by rare disease patients, caregivers and their loved ones is promptly rejected. Protecting the dignity, time, and well-being of the rare disease community is non-negotiable.
Additionally, we prioritize fairness and equity by ensuring that every project compensates participants at the fair market value, as defined by RAM. This approach not only values the time and insights of each participant but also reinforces our commitment to ethical engagement practices.
Ultimately, our goal is to collaborate on projects that bring genuine value to the rare disease community—whether by advancing research, improving access to resources, or amplifying rare disease voices. By maintaining these standards, we ensure that every Rare360 initiative contributes positively to the rare disease ecosystem.
What challenges has Rare360 faced in executing rare disease research projects and advocacy-based initiatives and how have these been addressed?
One of the biggest challenges we have faced at Rare360 is repairing deep-rooted, and historically warranted, trust issues between the rare disease community and the healthcare industry.
To repair trust issues, we ensure protocols are followed that safeguard participants’ personal information, ensuring confidentiality. We respect their contact information by avoiding excessive “spam-like” requests. We offer fair market compensation for all industry-based projects. And we provide various payment options to accommodate different preferences. We also carefully vet each project to ensure it aligns with RAM’s values.
By combining these measures with open, considerate communication, Rare360 works diligently to not only repair trust, but maintain it once its earned. Trust is an ongoing effort, and we are committed to continuing to put in the work to earn it through transparency, respect, and patient-focused advocacy.
Does Rare360 gather feedback from rare disease participants to improve its services?
Yes, Rare360 is designed to continuously evolve through the feedback provided by rare disease participants. We use a variety of methods to stay connected with rare disease participants, including surveys, direct outreach, and focus groups.
Our feedback process is dynamic and ongoing. We actively encourage participants to share their experiences and suggestions at every stage of their interaction with Rare360. This input helps us refine our approach, ensuring that we remain aligned with the evolving needs of the community.
Additionally, we maintain open communication channels through RAM, which allows us to stay attuned to the broader concerns and priorities of the rare disease community. Feedback is not just collected—it’s acted upon. We carefully analyze responses to identify areas of improvement and implement changes to enhance the participant experience.
By embedding feedback into our operations, Rare360 remains a responsive, patient-centric program dedicated to empowering the rare disease community and delivering meaningful impact.
We understand that Rare360 doesn’t just work with industry-based projects, but that Rare360 also works on advocacy-based projects. Can you provide an example of an advocacy-based project and its impact?
Absolutely. While Rare360 actively collaborates on industry-based projects, we are equally dedicated to advocacy initiatives that directly address the unique challenges faced by the rare disease community. One such example is Mental Health for Rare, a program designed to tackle the significant mental health and wellness gaps within the rare disease ecosystem.
The first initiative under Mental Health for Rare was launched in partnership with the nonprofit organization Pompe Alliance. Through this collaboration, we identified that individuals living with Pompe disease face a 2.5x higher risk of mental health challenges compared to the general population. This finding exposed a critical gap in the availability of mental health support for this community and underscored the urgent need to integrate mental health care into the overall management of Pompe disease.
Building on this foundation, Mental Health for Rare is now working to expand its advocacy framework to other rare disease communities. The goal is to generate training courses for mental health professionals that specialize in rare diseases and advocate for the integration of effective emotional and psychological support systems into healthcare plans.
Advocacy-based initiatives like this are central to Rare360’s mission. By amplifying the voices of the rare disease community and addressing often-overlooked aspects of their care, we aim to create a more holistic, patient-centred approach to healthcare.
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