Our Lab
We test novel, evidence-based programs and projects that facilitate awareness and education and amplifies the voice of underrepresented patients and families.
Our Lab
The Lab is for experiments, teaching or making something new.
Our Lab is a safe place where ideas may (or may not) work without judgement. Success is found in the journey through the process. We walk into the Lab knowing we are testing for ideas that have merit and sustainability and walking away from ideas that do not make it through.
Upequity leads its own lab projects and programs, provides operations for coalitions, as well as acts as an incubator and accelerator for other nonprofit organizations building their own rare disease platforms.
Provided below are Upequity’s current projects and programs, as well as current coalitions we are supporting.
RareInc
We work behind the scenes to incubate and accelerate organizations connected to nonprofit rare diseases on their learning and growth journey.
RareInc provides coaching, mentorship, and support to organizational leaders building new nonprofit rare disease organziations (incubate) or existing nonprofits who are in a significant growth period (accelerate). RareInc supports and assists leaders as they work through the many unique challenges and needs in their stages of growth. We work behind the scenes to incubate and accelerate organizations connected to nonprofit rare diseases on their learning and growth journey.
New organizations can be overwhelmed by the many steps to register as a business, build their community network, develop funding sources, find volunteers 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.
RareInc helps navigate. Founders and leaders in these situations can benefit greatly from our mentorship, coaching and motivation. Our coaches are talented and experienced individuals from a variety of professional and technical backgrounds. All coaches have experience in rare and chronic diseases as well as success in working with NIH, CDC, FDA, private foundations, and industry and academically credentialed MBAs, PhDs, LSWs, RNs, JDs, and other. Areas of support are individualized, based on needs.
Programa Somos Rare (We Are Rare Program)
Hispanic / Latinx Stats
– Sources: 2019 U.S. Census Bureau, National Research Center on Hispanic Children and Families, PEW Research Center
– Sources: 2019 U.S. Census Bureau, National Research Center on Hispanic Children and Families, PEW Research Center
62.5M+ live in the US
Largest minority group in the US
California and Texas = majority
19% of US total population
1 in 5 people in the US are Hispanic
68% speak Spanish at home
28% not fluent in English
1 in 4 children born in the US today are Hispanic
1 in 4 children born in the US today are Hispanic
Largest minority group in the US
62.5M+ live in the US
68% speak Spanish at home
California and Texas = majority
19% of US total population
1 in 5 people in the US are Hispanic
1 in 4 children born in the US today are Hispanic
1 in 4 children born in the US today are Hispanic
28% not fluent in English
This program leads from a vision where Latinx rare disease families are readily able to navigate healthcare and achieve their best possible quality of life. Program focuses on:
- Patient families make informed healthcare decisions
- Local health partners are educated and able to navigate rare disease resources
- Patient families are empowered advocates that champion health access needs
The need is clear for improving health literacy in the Hispanic population so that equitable resources are available to drive understanding and navigating of the complex US healthcare system. Fundamentals include resources accessible in Spanish, direct outreach to families where they are at, and peer connectivity and networking opportunities.
Somos Rare is build, led and advised by a network of Hispanic / Latinx individuals who understand rare diseases. We have expertise in education, social work, public health, social justice, advocacy, caregiving, business, specialty pharmacy, biotech, clinical care, mental health, community health, nutrition, etc. Our team also has a deep cultural awareness and sensitivity within US and Latin American communities. Direct program team members are fully fluent in Spanish and English and have a passion and experience in rare disease.
Rare disease patient advocacy organizations are unsure how to serve their Hispanic and Latinx families. However, with focus, dedicated efforts and commitment, this can be changed and families can be supported. To address this unmet need, Upequity has developed a national initiative to provide rare disease health education and support to Hispanic and Latinx rare disease families in the US and its territories.
For more information in joining this program or interest in supporting the Somos Rare Program, please contact us.
FAIR Time For Women Coalition
If the bleeding goal for men is 0, why is it not 0 for women?
FAIR Time for Women is building a grassroots movement to advance equitable access to diagnosis, care and treatment for women, girls and those assigned female at birth, with bleeding disorders such as Hemophilia, Von Willebrand’s Disease, Platelet Storage Pool Disorder, Glanzmann’s Thrombasthenia and others.
No matter your gender, ethnicity, race, or role in the bleeding disorder community – we need you! The FAIR Time for Women Coalition is dedicated to increasing awareness and improving treatment options for women, girls, and those assigned female at birth who have bleeding disorders. We encourage everyone to join with us. Together we are stronger.
Wisconsin Rare Disease Alliance
A Coalition to advance Rare Disease in Wisconsin
The Vision – Every Wisconsin family with rare diseases have the best health outcomes and quality of life possible.
The Mission – We engage as a unified coalition to support, inform, educate and champion advancements that improve the diagnosis, care and treatment of people with rare diseases in Wisconsin.
Are you interested in partnering with us or volunteering for Wisconsin Rare Disease Alliance? Click below to learn more.
GC Connexons
A Genetic Counselor Internship Pilot Program
This Pilot Program is a student genetic counselor (GC) matching program. The primary initiative is to pair current GC masters students with patient advocacy organizations. Student interns are provided a Certified Genetic Counselor supervisor/mentor and are expected to identify and complete at least one project for the organization during their semester internship.
Interns bring fresh perspectives, knowledge, and skills to any organization that they work with. Genetic counselors are taught to educate patients. They can help patients understand the genetic aspects of their conditions, the potential benefits of specific drugs, and the importance of adhering to treatment plans, leading to better patient compliance and outcomes. Each student is supervised by an experienced licensed genetic counselor who meets weekly with interns to review work, offer coaching, answer questions and ensure that the work is kept in alignment with the organization’s goals and mission.
We had over 50 rare disease organizations participate in an interest survey regarding this program. We are currently analyzing the results and will share our findings shortly.
