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Empowering Success: How Our Solutions Propelled IgG4ward to New Heights!

Published March 21, 2024

While a rare disease diagnosis can be devastating, being able to put a name to your condition and start searching for answers can provide a sense of relief. But what happens if the rare disease you were diagnosed with was only discovered during the 21st century, is relatively unknown within the medical community, and is almost entirely unknown to the public?

That’s the reality for thousands of patients living with IgG4-RD, a rare autoimmune disorder that causes chronic inflammation and the formation of fibrous tissue in various organs, and it’s something that IgG4-RD expert Dr. John Stone is working to combat with the recent creation of the IgG4ward! Foundation.

Creating IgG4ward!

In creating the foundation, there were several goals that Dr. Stone aimed to achieve, including:

· Improving the lives of people living with IgG4-RD through education

· Expanding disease awareness globally

· Being the trusted source of truth for IgG4-RD patients, caregivers, and healthcare providers

To achieve these lofty objectives, Dr. Stone required support from an organization experienced in building meaningful non-profit organizations designed to serve rare disease populations.

Vastly experienced in building collaborative, rare, non-profit patient organizations, including the Allo Hope Foundation, the Maternal Mental Health Leadership Alliance, and wAIHA Warriors, the PAS team had the recipe to execute and achieve Dr. Stone’s goals.

Laying the Groundwork for IgG4ward!

Before launching a mission to improve the lives of rare patients, a baseline operational foundation was needed. Embarking with the aim of officially launching the organization at the annual American College of Rheumatology (ACR) Meeting, the PAS team worked on an accelerated timeline to ensure the infrastructure was live and operational within a few months. To do so, PAS led the development of the following critical pieces of the equation:

· Compiling all necessary materials to supplement IRS Fast Track Form 1023 (501 c 3) application submission

· Working with the legal team to craft legal documents, articles of incorporation, governance, and leadership

· Obtaining an EIN, securing funding and establishing a bank account and SOPs

IgG4ward! Creative

Once the administrative tasks had been set in motion, it was time to get creative – literally. Over a two-and-a-half-month timespan, PAS had the honor of interviewing IgG4-RD patients, caregivers, and physicians to learn what they really wanted and needed from the foundation.

Through our interviews, we learned the IgG4-RD community was looking for three things:

1. Information that they could share with their own healthcare providers to help them understand what IgG4-RD is

2. Less technical and scientific disease information so patients and caregivers could more easily comprehend it themselves

3. Integrated patient perspectives to inform IgG4ward! branding and website development

With these and several other critical insights from the IgG4-RD community, we quickly got to work on building the website, social media channels, branding, and brand videos that would genuinely benefit the IgG4-RD community.

IgG4ward! Website

IgG4ward! Social Channels 

IgG4ward! Brand Videos

IgG4ward! Launch Event

We used the newly established website and social media channels as well as email to spread the word about the launch event.

From working with the event space to solidify timing, food, drink, and A/V, and designing marketing collateral for the event, to building an invite list consisting of key members of the IgG4-RD community and strategically advertising the event, the foundation was successfully launched at the world’s largest rheumatology convention.

With a goal of 75 attendees, more than 125 people showed up to the event, which was well documented across social media.

Creating an Online Community for those impacted by IgG4-RD

Most recently, PAS created and launched the IgG4ward! Online Community, which is easily accessed through the IgG4ward! website. This network is a safe online space for ALL touched by IgG4-RD to

meet, share, discuss, and learn together: for people living with IgG4-RD, their caregivers and families, their friends, and their healthcare providers.

With the foundation officially launched and the communication channels live – what’s next?

While IgG4ward! is still in its infancy at less than a year old, our plans to help the foundation educate, advocate, and spread disease awareness are unlimited, and we’re already educating and connecting diagnosed patients and caregivers throughout the world – something not possible just last year.

Keep your eyes open for monthly webinars featuring patients, caregivers, and physicians, interviews with members of the IgG4-RD community, the IgG4ward! Physicians Network – an online directory to help individuals more easily find a physician with expertise in IgG4-RD, and more.

Are you interested in creating a non-profit to support patients in disease communities vital to your company’s success?

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