Partners and Supporters
Partners and Supporters
Collective action is the cornerstone of how Patients Rising addresses the education and advocacy needs of patients seeking access to quality care for a serious disease or illness. We work in partnership with individuals, non-profit organizations, professional societies, and corporate supporters that are raising awareness, speaking out for patients and advocating for policies that align with Patients Rising’s founding Mission and Vision.
Our History of Partnership and Support
Founded in 2015, Patients Rising is a Washington, DC-based 501(c) (3) non-profit organization that works to fill a void in the debate over patient access to quality medical care.
Our partners and supporters enhance our ability to help patients across disease states. They make possible and strengthen our conversations with stakeholders in all sectors of the healthcare system – patients, caregivers, health professionals, researchers, payers, innovators, regulators and legislators.
Our partners and supporters are valued members of the Patients Rising community. Their generous intellectual, financial and in-kind support allowed Patients Rising to open its doors in 2015 and they continue to help us to this day. This makes it possible for us to advocate for giving patients – regardless of who they are and where they live – access to the right treatment, right now, with dignity.
Where Our Money Comes From
Programmatic Grants & Sponsorships
All non-corporate donations go to support the patients we serve through the Patients Rising Concierge program.
All grants are unrestricted, therefore none of Patients Rising’s programs or positions are influenced in any way by our donors.
Supporters
Our Supporters include companies who contributed over the past 12-months — updated quarterly.
For more information on corporate membership or general support for Patients Rising’s programs, please contact us at info@patientsrising.org
SUPPORTERS
The Pharmaceutical Companies of Johnson & Johnson, Janssen fights ‘sickness with science, improves access with ingenuity, and heals hopelessness with heart’. They focus on areas of medicine where they can make the biggest difference: Cardiovascular & Metabolism, Immunology, Infectious Diseases & Vaccines, Neuroscience, Oncology, and Pulmonary Hypertension.
Takeda Oncology endeavors to deliver novel medicines to patients with cancer worldwide through their commitment to science, breakthrough innovation and passion for improving the lives of patients. They combine leading scientific minds with their global resources to find innovative ways to improve cancer treatment.
At Bristol Myers Squibb, we work every day to transform patients’ lives through science. We combine the agility of a biotech with the reach and resources of an established pharmaceutical company to create a global leading biopharma company powered by talented individuals who drive scientific innovation.
SUPPORTERS
Baxter touches the lives of millions of people around the world every day. Our products and therapies can be found throughout hospitals and clinics – from the ER to the OR, from the pharmacy to the ICU – as well as advancing patients’ care in their homes.
The Pharmaceutical Companies of Johnson & Johnson, Janssen fights ‘sickness with science, improves access with ingenuity, and heals hopelessness with heart’. They focus on areas of medicine where they can make the biggest difference: Cardiovascular & Metabolism, Immunology, Infectious Diseases & Vaccines, Neuroscience, Oncology, and Pulmonary Hypertension.
For information on corporate membership or general support for Patients Rising’s programs, please contact twilcox@patientsrising.org.
For information on becoming strategic partners with Patients Rising Concierge, please contact jsliney@patientsrising.org.
PARTNERS
Tamvoes
Tamvoes is a health information management platform for individuals, families, and the healthcare
team. Their mission, to empower individuals so they can make informed decisions about their health.
The platform has some very smart features:
- Chronological Journal for tracking appointments, reminders, etc.
- Order Labs and view results
- Lab Report Analysis
- Track vital signs
- Search a directory of professionals by area
- Secure Chat with your team members
Together, Tamvoes and Patients Rising are creating educational resources. Tamvoes’ co-founder, Jessica Lunshof is an instructor in our upcoming Self-Advocacy Course, titled, “Knowing Your Rights and Owning Your Data”. Jessica has been featured on our Podcast and we are also brainstorming a project to see how real-time access to medical records impacts the patient experience.
DOLLAR FOR
Dollar For is a national nonprofit that crushes medical bills by empowering patients and advocating on their behalf.
The Affordable Care Act requires nonprofit hospitals to offer charity care programs to keep their tax-exempt status. These financial assistance programs reduce or eliminate medical bills for low-to-middle income patients.
When clients with hospital debt contact Patients Rising Concierge, we send them to the experts at Dollar For, and vice versa for clients with needs outside Dollar For’s expertise.
Together, this creates a network of support that strengthens our respective missions.
Cure Mito Foundation
Avery’s Hope
The Cure Mito Foundation is dedicated to advancing education and research for Leigh syndrome and mitochondrial disease. Their mission is to unite the global Leigh syndrome community to accelerate patient-centered research, treatments, and cures.
Patients Rising entered partnership with CMF in Nov. 2022 to make the Concierge service available to their families because the complexities facing these families are many. In turn, CMF provides expertise in mitochondrial disease to the Concierge network, as well as insights into familial caregiving and rare disease.
Avery’s Hope is named in honor and in celebration of the founders’ grandson, Avery Harris, who was born with Microvillus Inclusion Disease. In 2016 they launched “Avery’s Hope Charity Bicycle Ride”. Following this, they became a 501(c)(3) and have grown to not only raise money, but also awareness, and to advocate on behalf of the rare pediatric GI patient community.
Patients Rising became partners with Avery’s Hope in November 2022 with the goal of helping the families affected by rare pediatric GI illness with the various issues they encounter. In exchange, Avery’s Hope will provide expertise to Concierge clients who need lodging and support, or are faced with out-of-pocket or insurance-denied costs related to rare pediatric GI conditions.
PCs for People is a 501(c)3 nonprofit that distributes refurbished, low-cost computers and affordable broadband internet to low-income households around the United States.
Patients Rising began working closely with PCs for People in June 2022 through our Concierge program, where we sometimes connect to clients without a computer or internet. Through PCs for People, we can now get clients computers and broadband internet that will improve their access to modern healthcare.
PCs for People even offers ongoing support to those clients with their Digital Learning Center. This is a real game changing partnership for many of our Concierge clients.
Evans Disability is a Social Security Disability law firm with over 85 years of combined experience practicing Social Security Law. They have participated in thousands of Social Security hearings in front of Administrative Law Judges and have been very successful in winning claims at all levels.
Patients Rising began working with Evens Disability in June 2022 to direct clients from our Concierge service to their expertise, and likewise, when their clients have needs beyond applying for disability, they’ll direct them to us.
Evans Disability’s core mission is to give hope, encouragement and knowledge to people who are disabled, and help them find a pathway to financial security by walking with them through the Social Security disability process.
They also provide free one-on-one help with their Legal & Financial Navigation program, as well as CancerFinances.org, which helps people navigate finances after cancer.
Triage Cancer was the first organization we partnered with for our Patients Rising Concierge service. Now, when clients contact either of our organizations, we refer to one another freely, which has been a great benefit to many.
COCCI improves the quality of life for BIPOC (Black, Indigenous, and People of Color) who are affected by IBD, Digestive Disorders and associated Chronic Illnesses, through Community, Research, Education, and Advocacy.
We are working closely with COCCI on the, “Engaging People of Color with Inflammatory Bowel Disease” project. COCCI have worked on this project with us every step of the way so far.
Patients Rising attended their Equity in IBD meeting in September 2021, where stakeholders gathered to build relationships and share knowledge in the IBD community. Members of COCCI’s leadership have participated in Patients Rising’s Advocacy Masterclass. Patients Rising has helped COCCI develop writing workshops for their ambassador program.
Healthline is dedicated to making health and wellness information accessible, understandable, and actionable so that readers can make the best possible decisions about their health. Their content is created, fact-checked, and reviewed by qualified writers, editors, clinicians, and other contributors.
In 2021 we began a partnership with Healthline that included joining their Bezzy PsA community to support the psoriatic arthritis community, and getting input and collaboration on our “Engaging People of Color with Inflammatory Bowel Disease” project.
Citeline Connect
In 2022, we started a partnernship with Citeline Connect, with the goal of making clinical trial opportunities available to our community.
Because Patients Rising is disease agnostic, our community reaches into an incredible diversity of conditions. This makes us a good partner for Citeline, and their access to industry sponsored clinical trials makes what they offer valuable to our audience.
Patients Rising does not promote enrollment in any given trial, rather, we share information about the trials so patients can be aware of opportunities.
Disclosure: Patients Rising might receive compensation when people enroll in trial opportunities we share.
Fight Like a Warrior is a 501(c)3 nonprofit organization working to unite, empower, and advocate for those fighting life-altering health conditions around the world. They focus on general awareness initiatives, and combating stigmas and bullying.
We partnered with Fight Like a Warrior (FLaW) on their #WeAreAllVulnerable campaign – a pledge to wear a mask during the 2020-21 Covid pandemic.
FLaW ambassadors also created several 2-minute audio clips which we aired on the Patients Rising Podcast, discussing the challenges of living with chronic health conditions during the pandemic.
The Global Healthy Living Foundation (GHLF) advocates for improved access to care at the community level, amplifying education and awareness efforts within its social media framework. Central to this advocacy are GHLF’s successes educating about the importance of diagnosis, early and innovative medical intervention, long-term lifestyle improvement with the goal of improved outcomes.
GHLF and Patients Rising are both active members of the Collaborating for Care coalition and a diversity, equity and inclusion workgroup. Our missions align well.
The Alliance for the Adoption of Innovations in Medicine (Aimed Alliance) is a 501(c)(3) not-for-profit health policy organization. The mission of Aimed Alliance is to protect and enhance the rights of health care consumers and providers. The vision of Aimed Alliance is a society in which consumers, in consultation with their health care providers and loved ones, can make informed and individually appropriate decisions about their health care, and those decisions are not overridden by third parties.
Cancer Connect combines original content and news with expert doctor commentary from many leading health providers with editor curated content from the web to ensure our users have access to the most relevant and through educational content available to support their decision making. By combining information with a social community Cancer Connect provides cancer patients and their caregivers a unique destination to seek information, support, and inspiration.
We’re proud to partner with Clara, a platform empowering patients and caregivers by connecting them to trials that could offer a breakthrough treatment option and bring cures closer to reality. Visit www.clarahealth.com to learn more and search for a trial.
The Kidney Cancer Research Alliance (KCCure) is a grassroots organization of patients, caregivers, doctors and medical researchers dedicated to eliminating suffering and death due to kidney cancer. They increase funding to accelerate research hopefully leading to a cure for all patients and prevent future kidney cancer diagnoses.
The American Migraine Foundation is the official resource for millions of Americans living with migraine seeking reliable information about diagnosis, treatment and advancements in research. Launched in 2010 as a patient support and advocacy effort of the American Headache Society, AMF’s mission is to mobilize a community for people living with migraine and their support networks, and to drive impactful research into the third most common and sixth most disabling disease around the globe.
Healthcare Reformed is a nonprofit that seeks to educate the public on the unfair practices happening in our current healthcare system. Their goal is to give both healthcare workers and patients the resources they need to protect their physical, emotional, and financial wellbeing.
Patients Rising is working with Healthcare Reformed’s founder, Christy Snodgrass, to offer the Patients Rising Concierge service (always free) to her audience.
Our missions are in alignment, so expect to see many collaborations in the future.
Rare Patient Voice, LLC connects patients and family caregivers of rare and non-rare diseases with opportunities to share their opinions with companies and researchers by participating in all types of research studies. These include surveys and phone interviews, online bulletin boards, focus groups, clinical trials, and more.
Rare Patient Voice (RPV) includes the patient voice in research and ultimately improves the lives of patients everywhere. They do this by empowering patients and caregivers to share their voices with researchers and companies developing products, devices, and treatments to improve lives.
RPV have been partners with Patients Rising since 2019 when we collaborated on a survey to look at the costs to Type 1 Diabetics, which was presented at a national conference.
RPV is built on the core values of being a good resource for patients, a good partner to clients, a good employer, and a good citizen in our community. They are always listening to three key voices — their patients, clients and employees.
You can sign up to be a member of Rare Patient Voice and take their paid surveys.
Cure CMD was established in 2008 with a mission to advance research toward treatments and a cure for congenital muscular dystrophies (CMD) and improve the lives of those living with CMD through the engagement and support of our community. Cure CMD collaborates with an ever-growing network of dedicated affected individual- parent- research- clinician- and government-advocates worldwide to achieve our mission, with every initiative to continue to center the experiences and voices of CMD affected individuals and families. The organization works to empower the community, provide reliable and up-to-date information targeted toward our CMD community, and offer steadfast hope and commitment to our mission.
Cure CMD and the Patient Helpline entered into partnership in March 2023 because clients on the Helpline report muscular dystrophy as a diagnosis, or have issues regarding mobility aids and disability rights, all of which Cure CMD have expertise in. For those who reach out to Cure CMD for help, they can now send those clients to the Patient Helpline to find solutions for the many issues CMD patients and families face.”
