The Rare Advocacy Movement (RAM) is the first community-based network dedicated to protecting the interests of the global community of people living with rare conditions, chronic and progressive disabilities, and medical complexities as well as their families.

 

RAM represents a unified rare disease patient and caregiver ecosystem. It is committed to transparency, the empowerment of patients and their families, the correction of harmful systemic biases and assumptions, the dissolution of siloed patient-dedicated resources, and the removal of harmful bottlenecks from the rare disease ecosystem. 

​Trend Community, a digital health analytics company that turns conversations of rare, chronic, and emerging disease communities into actionable insights for research. Trend Community aims to facilitate understanding, strengthen advocacy, and spark scientific progress through research for good.

 

They help our IgG4-RD patients and caregivers through the IgG4-RD Connect community on Discord, research,  support, and resources. They recently added a mental health expert exclusively for our patients in the group. Trend Community is also helping amplify our collective voices within the rare disease space, as they help us bridge the gaps between patients and medical personnel..​

Bionews brings forth a plethora of news and information through their Rare Disease News & Community Network.

As of June 2025, BioNews has launched Igg4-rdnews.com, for the IgG4-RD community - a wonderful source of news, information, and patient & doctor written columns.

The Autoimmune Registry provides a global hub for research, statistics, and patient data on all autoimmune diseases.

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Their mission is to reduce the time to diagnosis, support research, compute prevalence statistics, and establish autoimmune disease as a major class of disease so that it receives the awareness of the public, the attention of healthcare providers, and the appropriate funding needed to improve upon existing treatment protocols and disease management strategies. 

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The Autoimmune Registry also helps amplify the voices of patients and patient communities by supporting non-profit organizations built around rare diseases and autoimmune conditions, such as ours.

They have created an IgG4-RD Registry, and the statistics will be shared with the community.
 

Patientwing aims to bring better treatments to more people faster. They do this by enrolling patients in clinical trials for rare diseases, oncology, and difficult-to-recruit conditions.​

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Patientwing is a fantastic resource and platform, bringing patient stories and journeys to light. 

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Amgen, an ally to the IgG4-rd community, has been working hard to understand the shared lived experiences of our patient community. 

Learn more about the resources they have made available for our community through the igg4outloud page.