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. 

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.

​

Patientwing is currently leading the INDIGO Study, which is expanding globally, so be sure to check out the INDIGO Study section for countries currently participating, and click the link to either register or find out more information on the study.

​

Patientwing also does a fantastic job telling patients' stories, which you can find on their site.​

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..​

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

​

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. 

​

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.

The Patientwing INDIGO Study for IgG4-related diseases is currently ongoing in multiple countries and continues to expand globally. Participating countries include: Argentina, Canada, Italy, Germany, Poland, Spain, Sweden, Turkey, UK and USA, with more being added.

​

Through our partnership with Autoimmune Registry, and collaboration with Patientwing, we can help spread the word to patients around the world who may be interested in participating or looking for a treatment option through this trial.​