“A good system shortens the road to the goal.”
– Ralph Waldo Emerson
RareInc provides coaching, mentorship, and support to organizational leaders in creating well-defined strategies, goals and plans for organizational success. Our coaches are talented and experienced individuals from a variety of professional and technical backgrounds. All coaches have experience in rare and chronic disease as well as success in working with NIH, CDC, FDA, private foundations, and industry and academically credentialed MBAs, PhDs, LSWs, RNs, JDs or other. Areas of support are individualized, based on needs.
Organizations have many unique challenges and needs in their stages of growth. New organizations can be overwhelmed by the many steps to register as a business, build their community network, develop funding sources and other. Long-standing nonprofits that find themselves in a time of fast-paced growth, often due to treatment and care advancements, can also run into organizational challenges as they quickly strive to ramp up their operations, professionalize and increase programs, services, community recruitment, outreach, and communications.
Founders and leaders in these situations can benefit greatly from mentorship, coaching and motivation. Upequity’s RareInc Program exists to help incubate and accelerate organizations connected to nonprofit rare diseases on their learning and growth journey.
Why does a strong Patient Advocacy Organization matter?
Patient Advocacy Organizations (PAOs) are critical patient and caregiver resources in rare diseases. PAOs play an important role on the patient and caregiver journey including:
- Diagnosis. A strong PAO builds disease awareness, helping to minimize delays in diagnosis that can lead to inappropriate disease management as well as disease progression.
- Treatment and Care. PAO Medical Advisors can provide unbiased information about existing and emerging therapies and foster strong educational knowledge of disease and treatment options to families.
- Clinical Trials. PAOs can be a critical resource in developing patient-centric clinical trials and trials that involve patients are a proven strategy to higher recruitment and retention in trials. This can directly impact the speed in which a trial can take place, ultimately helping a new therapy become available to patients faster. Time matters!
- Regulatory Alignment. PAOs can also be heavily involved in building and maintaining registries and natural history studies that can help identify the most appropriate endpoints based on disease evidence for clinical trials.
- Patient Engagement and Connectivity. An effective PAO knows who their patients and families are and continually is seeking to connect and provide ongoing value for the current constituents they serve.
Donor recognition and transparency:
Upequity is grateful to and acknowledges the following organizations that actively support this program:
- Travere Therapeutics
- Drugco Pharmacies
- HEMA Biologics
* To view full list of Upequity supporters please visit our Organizational Supporters page on our website.