Patient advocacy groups educate and support patients and their families throughout their healthcare journey. Many of these organizations are started and run by patients or former patients themselves alongside caregivers, doctors, and other medical professionals. Patient advocacy groups are concerned with all types of physical or mental conditions such as cancer, diabetes, cardiovascular disease, and rare illnesses. They offer emotional support, practical advice, and personalized services via meetings, seminars, counseling, and published materials.
The role of patient advocacy groups is crucial in the advancement of healthcare. They seek to increase public awareness of a disease and its symptoms, risk factors, preventive measures, and treatment options. These organizations often lobby for increased funding for medical research and other reforms related to the diseases they represent. Overall, their goal is to improve the quality of treatment and access to proper healthcare.
For-profit vs non-profit groups
There are two major types of patient advocacy groups: for-profit and non-profit.
For profit groups provide services to individuals who need help navigating various aspects of healthcare such as correct diagnosis, treatment plans, and insurance billing claims.
Non-profit advocacy groups work towards a collective, public or social benefit. All their earnings are reinvested in the health and well-being of patients within their community or on a national scale. Some examples of non-profit advocacy groups include the American Diabetes Association and the American Cancer Society.
Partnering with advocacy groups
Patient advocacy groups play a key role in rare disease research. Their vast networks make them instrumental in the recruitment of motivated and qualified individual patients into the research. Their experience and social cause cement their credibility with the public, legislators, and government agencies.
Rare Patient Voice has proudly partnered with over 780 advocacy and support groups to increase donations and recruit patients and caregivers. We provide patients with rare diseases a chance to be heard. We believe that their insights gathered through surveys and interviews are key to innovating medical products and services.
Work with us and enjoy a mutually beneficial patient advocacy group partnership. You can invite us to sponsor your events and provide support for your fundraising efforts. Our team will also be happy to conduct a free online survey of your members with complete analyzed results.
Just like you, we protect the interests of our members and partners above all else. Rare Patient Voice respects the confidentiality policies of all the groups we’ve worked with. We never ask for members’ personal data nor force anyone to participate in our research studies. Instead, we supply groups with a referral link and our contact information should their members be interested in working with us.
If you’re interested in becoming a referral partner or have any questions regarding our work, don’t hesitate to email us.
