Rare Therapist CME Curriculum

In addition to living with complex medical condition(s), rare disease patients and their caregivers often report suffering from the mental health impact of living with a rare condition.

While several seek support through mental health services, most therapists are not familiar with the realities of living with a rare disease. From parents who are told that their child has a rare disease that will impact the child’s ability to thrive, to adults who receive a diagnosis that means a significant reduction of their quality and/or length of life, living with a rare disease is a reality that, today, is not understood unless experienced, which makes it very difficult for people with rare diseases to seek professional support. 

As a result, the support available today from mental health professionals is often not adequate to address the traumatic lived experiences of people living with a rare disease and their families.

Educating the existing network of mental health professionals on the rare experience is a fast and scalable way to address this problem and provide needed help to the large community of rare patients and their families: 30M people in the US, 400M people globally. 

The overall solution is comprised of 3 products:

-The Rare Therapist CME curriculum

-The Rare Mental Health Certification

-The Rare Mental Health Provider Directory 

The Rare Therapist CME Curriculum is a series of online training content that educates mental health professionals on the realities of the rare disease experience. 

It is certified by NASW (National Association of Social Workers) and available through existing online medical training platforms (NASW institute, etc.) 

It offers 2 key benefits to Mental Health professionals:

1 - Therapists who take the classes from the Rare Therapist CME Curriculum receive CE credits required to obtain and maintain their state licenses. 

2 - Therapists who complete the full Rare Therapist CME Curriculum receive the Rare Mental Health Certification from RAM and are featured on Rare Mental Health Provider Directories available through rare patient platforms, opening them up to a market of millions of rare patients and their families. 

Rare patients and their families:There are currently no mental health services available on the market that specialize in addressing the impact of living with a rare disease or caring for a person with a rare disease. The people of the rare disease community currently do not have a group of mental health therapists to advise with, who specialize in understanding the unique situations that impact the people of the rare disease community. 

Treatment Centers: There’s ample clinical evidence of the positive role that mental health support plays in people with life-long chronic conditions. Medical Institutions that treat rare patients will benefit from being able to share the Rare Mental Health Provider Directory as a resource to their patients.

Therapists & other Rare Disease Specialized Medical Professionals:Mental Health Therapists are not currently able to specialize in treating and/or advising the people of the rare disease community as there are no educational programs like the Rare Therapist CME curriculum currently available. Additionally the Rare Therapist CME curriculum will provide other medical professionals that are seeking to specialize in rare disease clinical work, with insights necessary to gain a better understanding of the real world lived experiences of their patients.

Rare Patient Groups: most patient groups rely on peer support to provide the emotional support required by rare patients and their families. Most Patient Group website have very little today, in terms of Mental Health resources to make available to their constituents. The Rare Mental Health Provider Directory will fill this gap.

Run by rare patients, RAM lives the rare experience every day. It is composed of individuals who have a lot at stake when it comes to improving the lives of rare patients. Besides their credibility as rare patients, RAM members all bring to the organization many skills, whether business, artistic, legal, influence, technical or others. As a result, it is easy for RAM to reach out to its network and find the right skills for a project. Specifically:

• Heather Shorten, Executive Director of Pompe Alliance, will leverage her Mental Health experience as a MSW to build the CME curriculum.

• Nadia Bodkin, founder at RAM, will leverage her extensive network in the Patient Advocacy world to ensure 1) that rare communities have input into the design of the CME and 2) that the Rare Mental Health Provider Directory can be made available to all patient organizations who want it.

• JC Muyl, a digital health veteran, will quarterback the effort from a business standpoint, to productize the CME, the Certification and the Rare Mental Health Provider Directory into sustainable offerings.

To help fund the development of the digital training curriculum and make available to as many mental health professionals as possible through CME companies.

Our solution is simple. It leverages existing CME structures, known to Mental Health Professionals, in order to achieve maximum scale rapidly.

It is innovative in the sense that it helps Mental Health Professionals brand themselves as specialized in Rare. We have experience working with provider directories and know that patients want to be able to select their providers based on how relevant they are to their needs.

Finally, our solution brings the Mental Health resource directly to Patient Communities. Access is probably one of the biggest issues in Mental Health. We solve that by bringing Provider Directories of relevant MH professionals right into the online communities where patients are.

CME development: 

1 in Year 1, 6 in year 2, full curriculum in year 3. Maintenance after that

To achieve this goal, we will hire CME writers to work under Heather’s guidance to build the content.

CME rollout to Mental Health Professionals:

Year 1: available in all states (CMEs are based on states). Up to 100 MH professionals trained.

Year 2: 1000 MH professionals trained

Year 3: 5000

Year 4: 10000

year 5: 25000

To achieve these goals, we will work with sponsors to promote the use of the CME. Industry Sponsors (e.g. Pharma Cos with products in rare disease space will want to support MH for rare). We will also approach rare disease treatment centers and promote the curriculum for their HCPs & MH resources.

Ultimately, the impact will be in terms of actual rare patients & caregivers working with MH professionals that are RAM certified. We will implement a system to track this.

In healthcare, change doesn’t happen unless it’s based on science. That’s why so many startups fail. Like Whole Health or BHI integration, we truly believe that addressing the mental health of rare disease patients & their families, we can have a meaningful impact on their outcomes.

Beyond that, our philosophy is that no change can/should happen unless it is beneficial to patients. RAM is run by rare patients, and involves them as part of advisory panels every step of the way. It takes longer to design a new product that way, but the chances of adoption are higher.

All available technology:

eLearning platforms and electronic provider directories

RAM is a group run by rare patients who fight for equality, access to care and quality of life for rare, disabled communities, including for minorities within the rare community (see Our Lives Matter Collaboration)

See our code of conduct here for further details:

https://www.rareadvocacymovement.com/code-of-conduct-for-membership

We strive to make our solution self sustainable

- Sponsorships & grants (like MIT Solve) will pay for the development of CMEs

- MH professionals will pay for the CME classes (they do today). Sponsors, which we will secure, will make the tuition that much more affordable for MH professionals, which will boost the uptake of the classes.

- Note that all rare patients involved in the development of the CMEs will be remunerated as part of the process.

- Patient groups will promote the RAM certified MH professionals within their communities. We will look at a model where rare patient groups benefit from bringing access to MH resources into their communities. For instance, we will seek sponsors to provide co-pay for patients to seek treatment for RAM certified professionals.

- The Rare Therapist Certification will also be sold to medical Centers as a program to help with education of their provider network.

Initially through sponsorships: rare diseases is of huge interest to pharma. Our position as a credible, trusted rare patient advocacy group gives RAM access to rare populations that Pharma is eager to support. The Patient Support function within Pharma spends a lot of money in various patient-centric activities. Through our network of highly reputable rare disease community leaders, we have access to many pharma companies willing to support projects that will support their constituency.

But we want a model that is sustainable: MH professionals will pay for the CME classes because they benefit from getting access to the rare patient “market” - 30M in the US alone…

Without divulging details, the people in our solution team have raised well over $100ks in corporate sponsorships over the years.