PemNav

International Pemphigus & Pemphigoid Foundation

Pemphigus and pemphigoid are rare, autoimmune blistering diseases that result in potentially life-threatening destruction of the skin and mucosa. In cases of pemphigus or pemphigoid, a person’s immune system makes autoantibodies that attack healthy cells in the skin or mucous membranes. As a result, skin cells separate from each other. Fluid then collects between skin layers, forming blisters that may eventually cover a large area of skin. This results in fragile, painful lesions that will not go away without proper treatment. Currently, no cure exists for pemphigus or pemphigoid, only the hope of remission.

Definitive statistics on the incidence and prevalence of pemphigus and pemphigoid are not available, but estimates of the number of new cases diagnosed each year range from as high as 5 per 100,000 to as low as 1 per million, depending upon the type of disease and the ethnicity of the affected population. Roughly 42,000 new pemphigus/pemphigoid patients will be diagnosed each year worldwide (2,200 in the US). These diseases affect people across gender, racial, and cultural lines. Though these diseases can affect people of any age, they are more commonly found among elderly populations. 

In their “Healthy People 2030” project, the U.S. Department of Health and Human Services, Office of Disease Prevention and Health Promotion defines personal health literacy as “the degree to which individuals have the ability to find, understand, and use information and services to inform health-related decisions and actions for themselves and others.” This project also highlighted the negative health outcomes related to poor communication between patients and medical professionals. The report states, “Good communication between health care providers and patients is part of high-quality care, but many people have trouble talking with their health care providers. Strategies to improve communication between healthcare providers and patients can lead to better prevention, diagnosis, treatment, and self-management of diseases.”

For rare disease patients, problems related to health literacy and communication are often compounded by an overall lack of available information, as well as medical professionals who are inexperienced in diagnosing and treating their diseases. For people who are living with pemphigus or pemphigoid, managing both their physical and mental health can be difficult. It is often hard to find a doctor who has treated these diseases, making the journey to a correct diagnosis and timely, effective exceptionally challenging.

PemNav is organized around three main objectives:

1. Guide people affected by pemphigus and pemphigoid across their entire disease journey, from obtaining a timely diagnosis and initial treatment to disease management, maintenance, and remission.

2. Establish meaningful feedback loops that reflect the needs of the global patient population and strengthen the IPPF’s ability to represent the “patient voice” among key opinion leaders.

3. Connect the community of patients by embracing useful technology in ways that both expand the IPPF’s capacity and “meet patients where they are.”

PemNav is the next generation of the IPPF Peer Coach Program. Peer Coaches are volunteers who have learned how to manage their diseases. They are willing to share their personal tips and tricks, as well as IPPF resources and educational materials that help people affected by pemphigus and pemphigoid improve their knowledge of these diseases (i.e. health literacy) in order to have meaningful discussions with their healthcare teams.

According to IPPF data, it takes the average pemphigus or pemphigoid patient 5 healthcare providers and 10 months to obtain a correct diagnosis. For many patients, these numbers are significantly higher. Once diagnosed, patients need to maintain ongoing discussions with their healthcare providers in order to make informed decisions about disease management and treatment options. This journey is not only physically straining on a patient, but also mentally taxing. Due to the rarity of pemphigus and pemphigoid, patients usually don’t have the opportunity to meet another person with their disease and can often feel alone. They have never met anyone with their disease, and they feel that no one understands the physical and emotional pain they are going through.

Though these diseases can affect people at any stage of life, the average onset for pemphigus is between 50-60 years old, and pemphigoid is closer to 80. This means that many pemphigus and pemphigoid patients experience comorbidities that exacerbate their overall health conditions.

For 30 years, the IPPF has existed with the primary goal of providing information and support to pemphigus and pemphigoid patients. Though our mission has expanded over that time to include advocacy, awareness, and research, patient support is still at the core of everything we do. To this end, the IPPF Peer Coach Program has been our central program for well over a decade. 

IPPF Peer Coaches are pemphigus and pemphigoid patients who have the knowledge and first-hand experience of living with these rare, chronic diseases. IPPF Peer Coaches help more than 1,500 patients and caregivers each year by improving health literacy and reducing patient anxiety so that patients can have meaningful discussions with their healthcare teams.

A 2017 scoping review of ten publications found multiple perceived benefits for rare disease patients who received peer support. Specifically, the publication identified seven different perceived benefits of participating in rare disease support groups, which provide similar peer support: “(1) meeting and befriending other people with the same rare disease and similar experiences; (2) learning about the disease and related treatments; (3) giving and receiving emotional support; (4) having a place to speak openly about the disease and one's feelings; (5) learning coping skills; (6) feeling empowered and hopeful; and (7) advocating to improve healthcare for other rare disease patients.” (Delisle et al., 2017).

The IPPF’s Peer Coach Program provides similar benefits to patients with rare diseases. The IPPF connects patients with a peer coach who also has the same disease and shares similar experiences. Peer coaches inform patients about current treatments and disease management options, thereby improving health literacy. They also empower patients by providing practical information and emotional support in a safe, private forum while also encouraging patients to become stronger self-advocates.

Over many years, the IPPF has grown from a grassroots operation into a legitimate international organization. As our ability to connect with patients from around the world continues to expand, new and innovative approaches to our core program are critical. This is further emphasized by recent developments in technology, such as artificial intelligence. Our goal with PemNav is to not only rebrand our Peer Coach Program, but to rebuild it into a scalable, modern patient support program that reflects the wide-ranging needs of the current global patient population.

PemNav is an evolution of the IPPF's current patient support programming. Though our programs continue to be successful and receive overwhelmingly positive feedback, the IPPF recognizes that innovation is necessary to grow beyond our current reach and connect with a globally diverse patient population.

Currently, not many models for one-to-one peer support exist in the rare disease world. The IPPF Peer Coach Program is one of the few formalized efforts in this space. By evolving this program into one that better connects the global patient community while supporting them through all stages of the disease journey, we can empower patients to be their own best advocates. 

Further, we believe that this program can model a solution to a broader issue among patient advocacy and support organizations: small budgets and limited capacity. Organizations such as the IPPF are used to achieving a big impact with limited capacity. However, global growth remains a significant challenge. By creating a program that leverages emerging technologies (such as AI) as well as established communications apps (such as WhatsApp) we can more easily reach a diverse, global patient community. When coupled with updated training for staff and volunteers, this becomes a scalable and replicable program that can have exponential impact on many different patient communities.

The Amgen Prize would provide an immediate investment in the IPPF's evolution of the Peer Coach Program into PemNav. This means the ability to go beyond quick changes. The Amgen Prize would allow us to develop innovative solutions that would form the foundation of the entire IPPF's patient support programs for many years to come.

The Amgen Prize would allow us to develop a formal training program for PemNav, investigate the best uses of AI and other new tech that can help patients find information about their diseases more easily and in their own languages, and free up current staff capacity to create more meaningful connections with patients.

The IPPF was founded in 1994 by Janet Segall, a patient who simply wanted to connect and share information with other patients. There wasn’t an easy way to do this, so Janet launched a foundation. Over the following 30 years, the network Janet started has grown to become the biggest patient advocacy and support organization for pemphigus and pemphigoid patients worldwide. From the beginning, patient support has been the backbone of the IPPF, and it continues to be our guiding light to this day.

The IPPF mission is to improve the quality of life for all people affected by pemphigus and pemphigoid through early diagnosis and support.

We achieve this mission by providing accurate, expert-reviewed information about pemphigus and pemphigoid to patients and medical professionals. Our programs support and educate patients and caregivers so they may live fulfilling lives; raise awareness of disease symptoms to improve the diagnostic journey; and position the IPPF as a collective “voice” that represents our community’s greatest needs to researchers, government officials, and pharmaceutical companies.

Currently, half of the IPPF staff and over 85% of its Board of Directors are pemphigus or pemphigoid patients and caregivers. Elevating the patient voice is central to everything we do as an organization.

The Team Lead for this project is Patrick Dunn, IPPF Executive Director. Patrick has been with the IPPF for 10 years. He started in health communications roles, where his background in communications allowed him to have a direct and meaningful impact on the lives of people affected by pemphigus and pemphigoid. Patrick became Executive Director in 2022.

A core objective of the PemNav program is to deeply integrate input and feedback from the patient community. The IPPF plans to do this by establishing a permanent patient advisory council. This council would be made up of representatives from the global patient community who can provide insight, feedback, and guidance to our patient support programs. Additionally, this council could surface candidates for future IPPF leadership positions.

Full-time staff: 3

Part-time staff: 2

Volunteers: 12