RAM is dedicated to documenting the rare disease landscape and assisting various stakeholders in successfully navigating the patient advocacy community. In order to effectively navigate the rare disease community, one must understand the unique realities of the patients, caregivers and their support systems.
In order to obtain the opportunity to gain the understanding needed in order to effectively navigate the rare disease community, trust must be developed through a vetting process. RAM offers a unique platform where members of industry and other patient advocates can join seasoned advocacy leaders in the vetting process of various stakeholders interested in learning about the complex dynamics of the rare disease advocacy landscape.
Adults Living Rare
The Rare Advocacy Movement (RAM) and The Planning Shop (TPS) have teamed up to gain a better understanding of what the rare disease landscape looks like in the U.S. for adults aged 18 and over. This survey will generate useful data which RAM and TPS will use in a number of campaigns to help inform public discussions about rare diseases, and raise awareness of the challenges that adults living with rare conditions face on a daily basis.