In the last few years, companies committed to driving positive social impact have embraced ESG and DEI – the framework used to evaluate a company’s diversity, equity, inclusivity, performance and sustainability. Having previously taken a backseat to Corporate Social Responsibility (CSR), ESG and DEI have recently evolved to become a moral imperative and vital tool to conduct business. Investors are making moves based on company ESG and DEI commitments and disclosures. In fact, the Securities and Exchange Commission has yet to finalize new rules for company disclosures regarding ESG and DEI policies, but initial thoughts are these topics will continue to be a high priority.

Now, on the heels of the Supreme Court decision to strike down affirmative action, it’s more critical than ever that companies evaluate their existing ESG and DEI commitments – or develop an ESG and DEI strategy if they have yet to build one – to assess the implications of the ruling on their workplace culture, policies/benefits and charitable giving initiatives.

As a communications agency that has partnered with a variety of healthcare clients to build internal and external awareness for DEI and ESG programs, we believe that a well-thought-out communications plan can support companies in not only remaining consistent, impactful and transparent in their ESG and DEI communications, but can help align positioning around key societal issues that impact their commitments.

We offer three critical steps for communicating your value system that you should be doing right now.

Evaluate Your ESG and DEI Strategies

First, assess the possible implications of the Supreme Court ruling on any diversity and representation initiatives you support so you can proactively prepare for future impacts to your key stakeholders and business values. The potential impacts on the corporate world are still unclear, but the decision could embolden attacks on corporate diversity, equity and inclusion initiatives. It could result in a less diverse candidate pool in coming years or in companies feeling obligated to remove ‘diversity’ from titles, for example. It’s also important that all programs and activities align to a clearly defined ESG and DEI strategy that has buy-in from both leadership and employees, to ultimately serve as your north star as you navigate external factors and influences. Finally, assess what has been communicated already around your ESG and DEI commitments and where, to guarantee continued transparency and accountability, and pivot or reinforce messaging as needed.

Tell Your Story – Consistently.

If you can’t articulate your story, no one else can. Creating a core narrative that holistically captures your ESG and DEI commitments while reinforcing its connection to your values and business strategy will ensure your efforts are well-articulated by leadership and understood by internal and external stakeholders. A compelling narrative will assist in the short-term, allowing you to present business changes in a coherent way and in the long-term by catalyzing engagement across your employee and customer base. A core narrative also enables you to remain nimble and agile in taking a stance on societal issues by providing a framework for all proactive and reactive statements – and it doesn’t stop there. How you measure against this strategy is equally important. Ensure that you’re developing a measurement plan with key metrics to track return on engagement. How you cascade the narrative is also essential to its adoption within the organization. Don’t forget – your people managers are a critical communications channel and essential to bringing employees along your ESG and DEI journey.  It’s important that everything you include in your narrative has proof points of tangible actions taken by your organization — in short, proof that you’re really walking the walk.

Deploy Your Plan

Once your defined strategy has been communicated to key audiences, it’s time to scenario plan. Scenario planning as soon as an issue arises that has implications to your business will ensure your ability to engage quickly, decisively and in alignment with your strategy and values.

While these steps will aid your organization immeasurably in the short term, it’s the long run that will matter even more. In an ever-polarizing world, these divisive topics will continue to make their way to the forefront, and corporations will be increasingly pressed to put their stake in the ground. Where you put that stake is an individual choice for each organization to make, but the expectation will be to make that decision and communicate it widely internally and externally. As the longtime leader of Walt Disney Co., Roy E. Disney, once famously said, “When your values are clear to you, making decisions become easier.”

Natalia Forsyth, SVP, Head, Digital

 

Social media has altered just about everything about how we connect with others. While the established Dunbar’s social hypothesis suggests that the human brain can only form stable attachments with 150 individuals at one time, social media demands so much more of us, connecting us to hundreds, if not thousands, of others across a myriad of platforms. But a new era of ‘Psychologically Responsible Social Media,’ may be changing the tide and this could be good news for health communicators everywhere. Users will creep slowly back to 150 meaningful connections by seeking out private social media spaces where they can be themselves. So what is this new trend, and how did we get here?

The Genesis

During the pandemic, social media usage hit an all-time high. We had more time on our hands and less in-person interaction with others. Naturally, people sought out entertainment and connection online, but there were a handful of devastating consequences.

Heavy social media users reported strong feelings of loneliness. Others struggled with comparing themselves to others on social media, with many reporting feeling lower self-esteem as a result. This added turmoil forced users into different corners of the internet, with different features that didn’t impact them so negatively.

The Tipping Point

Elon Musk’s takeover of Twitter seems to have brought on a storm of innovation across the social media landscape. With a social media giant like Twitter going through a crisis of faith, other platforms have had the opportunity to take their place as leaders, while giving newcomers the opportunity to sprout.

Established platforms such as LinkedIn have benefited from this shakeup, however it’s the smaller more nuanced platforms that have most caught my attention. These niche platforms will be the future of social engagement and are perfectly primed for healthcare.

The New Era

In the ‘Psychologically Responsible Era of Social Media,’ platforms are leaning toward genuine social interaction. They aren’t looking for reach or likes, but instead seeking out smaller spaces where they can have intimate connections with their community. Users are in pursuit of privacy and safety, and new platforms are serving it up.

Platforms like Community, Discord and Substack have begun to flourish during this time because they offer just that, an intimate discussion for a small group of trusted individuals. A platform like Community allows individuals to curate their social engagement through SMS, reaching their most loyal followers in a more personal way. Substack allows individuals to share their content through curated newsletters, allowing for authentic engagement without any of the stressors of more mass market social platforms.

What This Means

These new platforms allow us to move further down the funnel than ever before. Whereas legacy platforms like Facebook and Twitter allow us to spread broad-based awareness across social media, these more intimate spaces lend themselves more to engagement and conversion. This means we’ll be able to reach a more selective audience with more impactful messaging. What we will lose in scale we’ll make up for in targeting. In the end, social programs will garner a higher ROI.

This is especially good news for healthcare where we often have to engage niche patient communities or specific healthcare provider populations, and reach them with deeply personal health messaging. These safer spaces may allow for health conversations to flourish like never before.

Only time will tell how this shakeup will impact our strategies in 2023 and beyond, but one thing is for sure, change is upon us, and it appears to be positive for social media marketers everywhere, especially in healthcare.

Allison Pishko, SVP, Head, Internal Communications

 

Return to office has been a subject whispered – and yelled – about in board rooms since 2022 and there are still no clear answers in sight. While remote work started as a means of keeping employees and their loved ones safe throughout the pandemic, it’s made way for a broader debate surrounding the long-term value of work-from-home vs. in-office work.

There are cases to be made on both sides of the issue. Employees are reluctant to give up the flexibility of working from home. They relish the work-life balance and the lack of an arduous commute. Many stress they have been more productive working from home, and happier too.

And employers place value on in-person collaboration and efficiencies in decision making when working in person as well as opportunities to grow their staff professionally by having face-to-face interactions with leaders.

Many companies are mandating a hybrid model of work where employees will spend 2-4 days in the office per week – but even this compromise is proving challenging for employees to accept.

In the end, whatever your return to office policy is, how you implement it matters. For those of you in the position of steering a return-to-work policy, here are a few points to keep in mind to ensure the messaging is received with clarity and empathy.

Clearly Communicate Your Company Values

Focusing just on the policy will feel punitive to employees. Instead connect to the broader story of the company’s goals and vision, with the return to office policy as an integrated part of the narrative.

Acknowledge the Pros and Cons to Both Sides of the Argument

Don’t be blind to the fact that there are people on both sides of the argument with legitimate points. Use the debate to address questions and concerns and help explain the policy. Providing an open forum for both perspectives is key to cultivating open dialogue.

Ensure Leadership Buy-in and Pull Through

If leaders are not in agreement with the policy and willing to embrace it themselves, it will never work. Full stop. They need to be seen in person and as champions of in-office benefits. Employees follow leaders.

Remain Consistent and be Willing to Adapt

The message needs to be delivered more than once and on more than one platform. If there is an aspect of your policy that needs to be adjusted, don’t be afraid to make that change. The landscape is constantly shifting so be prepared to make changes to existing policies if needed.

Bring Employees Along on the Journey

Shift the focus when surveying employees from “how is your work/life balance?” to “how does it feel when you meet with your colleagues in person?”.  Help them see the advantages of being in the office while still maintaining a level of flexibility whenever possible.

Create Meaningful Connections

Treat teams to coffee vouchers to use when having a 1:1 in person with a team member, host monthly onsite team lunches, etc. It doesn’t have to be big, but a gesture to show appreciation for the return to office will go a long way.

The one thing everyone can agree with is that COVID-19 has changed the workplace forever. By being transparent, compassionate, and consistent, we can help create a workplace that will serve everyone’s needs.

Green Room Communications last week unveiled its enhanced practice areas and new website, which capture the agency’s heritage, reflect our core values and connect to the work Green Room does for healthcare clients every day.

“When we founded Green Room Communications more than 15 years ago, we aimed to be an agency that gives clients access to the specific expertise and skills needed in the healthcare communications space, in an innovative way,” said Deb Fowler, founding co-partner of Green Room Communications. “We have never been afraid to do things differently, as evidenced by our model that brings together both employees and consultants to deliver customized support to our clients.”

Since launching in 2008, Green Room has grown to more than 40 employees and expanded to a network of more than 300 senior-level communications consultants across the United States and around the globe. As part of the agency’s continued evolution, two new leaders have been added to oversee specialized communications strategy and execution for our clients: Natalia Forsyth, SVP & Head, Digital Strategy and Andrea Tillman, SVP & Head, Consumer & Stakeholder Engagement. Allison Pishko, who has been with the agency since 2014, has been elevated to SVP & Head, Employee Engagement & Culture.

“Sometimes our clients need grit—problem solvers who just know how to step in and get things done. Other times our clients need higher level strategy, creative ideation and counsel to manage pivotal milestones or challenging issues,” said Karen Carolonza, founding co-partner of Green Room Communications. “With the additions of Natalia and Andrea, and the elevation of Allison, we are continuing to build out our robust expertise, while also keeping true to the flexible and scalable model that Green Room Communications has become known for in our industry.”

Learn more about Green Room Communications’ areas of expertise and new look at www.grcomms.com.

When Celebrities and Pharma Converge

Andrea Tillman, SVP, Head, Consumer Health & Brand Integration

 

Celebrities are no strangers to pharma and biotech partnerships. Since the 80’s we have seen celebrities raise awareness around different diseases or treatment options, tell their story, or that of a loved one. They are the perfect vehicle to get out a broad-based message to a sweeping group of admirers, all with a personal, humanistic, touch. There’s no denying that this type of partnership can be valuable when trying to reach an audience, but there is often a significant investment. Determining where these types of partnerships are most impactful, and who to engage, is critical.

The Credibility Necessity

Above all, your celebrity must be seen as credible to your specific audience. This means your celebrity must have a personal connection to the disease state or product and be open to speaking about it on a personal level. Take a step back. Would you believe and act on the message of your chosen celebrity?

A best-in-class example of a highly credible partnership was Hologic’s work with Sheryl Crow, Mary J. Blige and Ciara. Both Crow and Blige were breast cancer survivors who could speak passionately about the need to get screened early and often and Ciara is a well-known champion for health equity. Their credibility was wildly compelling and Hologic witnessed a significant uptick in mammograms post launch.

The Celebrity ‘Sweet Spot’

Are you working in a rare disease or in a condition that impacts millions globally? If it’s the latter, a celebrity might be a perfect addition to your marketing mix. Celebrities are costly but that’s because they come with an enormous audience to mimic the broad-based audience of your target demographic.

A best-in-class example of a campaign that impacted millions was Khloe Kardashian’s work with Nurtec ODT, a migraine drug. Migraines impact more than one billion individuals each year so it makes sense that Pfizer sought out a celebrity with a wide following of nearly half a billion.

Keeping it Real

Celebrity marketing can really hit the mark when it comes from the heart. Celebrities are known for their glossy exteriors, so when they open up and share something a little raw with their audience, it catches attention and engages their audience in a deeply personal way. This kind of personalization moves consumers to action.

A best-in-class example a campaign that got real was Kristin Bell’s partnership with the online Rx provider, Hers. Bell opened up about her longtime struggles with mental health and used her message to fight stigma around seeking appropriate treatment. The campaign came across as authentic in all the right kinds of ways.

Evaluating Risk

Finally, and arguably most importantly, make sure you partner with a celebrity who will be low risk for your brand, and be prepared to deal with the consequences if they end up becoming more risky. This means extensive and appropriate vetting of the celebrity as well as perception analysis. Some celebrities have said uncomfortable things in the past, others may have alienated whole segments of the population. You must mitigate that to the best of your ability.

A great example of a brilliant celebrity campaign that came under fire after launch was Chrissy Teigen’s work with Ferring Pharmaceuticals. Shortly after Ferring launched their Fertility Out Loud campaign, Teigen came under fire for insensitive comments made on her personal Twitter profile. Suddenly, a low-risk, much beloved, celebrity became divisive and the team at Ferring had to weather the storm.

Celebrities can move mountains for brands but only in the right setting, with the right message and the right safeguards. Do you due diligence and choose wisely and you could be amazed by the results of your campaign.

Today is National Disability Independence Day, commemorating the signing of the Americans with Disabilities Act (ADA) on July 26th, 1990 – a civil rights law that prohibits discrimination against individuals with disabilities in all areas of public life. At Green Room Communications (GR), not only do we strive to support those who live with a disability through our advocacy efforts, but we are committed to cultivating a culture of inclusivity and equal opportunity for our team members affected by a disability.

One of the most critical ways we do this is by leading with empathy and offering flexible, remote working options that enable our team members to balance their professional growth with prioritizing their, and their loved ones’, health and well-being.

According to a recent study by AARP and S&P Global, 75% of parents and family caregivers report a moderate or major increase in stress and 60% of women who juggle work and caregiving responsibilities are now providing more care than before the pandemic.

As we continue to seek ways to support our employees, we gathered the below insights from our team about their personal experiences caring for loved ones with disabilities while at GR.

LeighAnne Castimore, Executive Assistant

My son, Henry, is 12 and was diagnosed with autism at age two. It became abundantly clear within the first few years of diagnosis that working full-time, in-person, would be impossible. After the initial pandemic shutdown, I realized remote workplaces were gaining popularity and thought a remote option may be a good fit for me. I stumbled upon GR and learned during the interview that they supported remote roles even prior to the shutdown. It was comforting to know that this was a policy not created due to COVID, but one that was already part of their culture. GR understands and supports work/life balance more than any company I’ve ever worked for. I can tend to my son’s needs as they present and balance my work responsibilities. I heard GR’s Managing Partner, Deb Fowler, once say, “You can have it all!” and I say it all the time now. You really can have it all when you have the right support.

Maryanne Caruso, Consultant

I’m a caregiver for my elderly mother. I take her to all doctor appointments, manage medication, grocery shop and make sure she has meaningful social and wellness components in her life. She recently fractured her pelvis and will be in rehab for a while, and I will be navigating through this process as her advocate. My former role would have had me back in NYC without flexibility, compassion and empathy for my situation. Now, I have the flexibility to be productive in my career while making sure my mother gets to all appointments, gets the best care and has an engaging quality of life. One silver lining of the pandemic is that many other companies are now recognizing the importance of work-life balance, which we can all benefit from.

Allison Pishko, Senior Vice President of Client Navigation

My younger daughter has a rare genetic mitochondrial disease which resulted in her suddenly losing her sight at age 20. Once I returned to GR, after initially taking leave, the flexibility of their model provided me the opportunity to attend doctor’s appointments with my daughter while knowing I was able to return to my work when I had the opportunity, and that I had an incredible team that had my back when I needed to be out. The adage of “you never know what people are dealing with” is true, and in my case, my child developed a disability seven years into my career at GR. If this was not the flexible, supportive environment it is, I am not sure I would have been able to continue working here. I was always supportive of team members who needed to flex their time to take care of a child with a disability or special needs, I just never imagined I would have been one of them.

Jen Zoller, Vice President of Client Navigation

I’ve been with GR for just over two years and have never felt more strongly that I am in the right place at the right time. As a working mother of three kids, one with Down Syndrome, it is critical that I have a level of flexibility that allows me to manage work and life. Parenting a child with special needs requires advocating for your child, but also, advocating for yourself. Cutting out my commute time and being closer to my children’s daycare is a critical component that helps me get my work done and handle unforeseen appointments that pop up. Most importantly, it gives me a better peace of mind to focus on work, but pivot quickly if I ever need to. I’ll admit that working from home requires a tremendous amount of discipline, reliability, time management and effort to be engaged with your teams and clients. It is a privilege that I work hard to protect, because ultimately, I would not be able to do what I do without it. Lastly, I want to encourage people to, instead of focusing in on what people ARE NOT ABLE to do, focus on what they ARE ABLE to do so we are celebrating the individual’s abilities.

 

To join in recognizing and supporting the disability community, visit the ADA National Network to learn more.

In this multi-part series, we explore considerations and approaches for helping clients decide if, when and how to respond to pressing social/political issues.

Authenticity, Urgency, Empathy. As our socio-political world becomes increasingly complex, there is a heightened expectation for companies to take a stand on hot-button issues – and to do it right. With silence often no longer an option, companies have become increasingly intentional about sharing their perspective on everything from environmental sustainability to Black Lives Matter. Yet decisions on the if, when and how to communicate need to be grounded in ensuring the message is timely, authentic to their ability to meaningfully have a voice on the issue and empathetic to the needs of their internal and external stakeholders. With the recent decision by the Supreme Court to overturn Roe v. Wade, companies are faced with another key moment in time to assess response, and thoughtful communications counsel can help them navigate issues that often present more questions than answers.

In Part 1 of this series, we’ll explore one stakeholder group that’s often driving the need to engage with societal issues and that should be made apprised of any corporate stance: Employees.

Understanding Employee Expectations: Companies can at times be so focused on building their external reputation that they neglect communication to their most valuable stakeholder group – their employees. With societal issues taking an increasing mental and emotional toll on employees and their ability to show up as their best selves at work, any company response/action must prioritize their wellbeing and consider their perspectives and expectations.

While not all employees will feel the same way about a particular issue, many now expect employers to have a voice and take meaningful action. That means, inaction or “going dark” in the wake of a large social issue could signal indifference and jeopardize trust and credibility in the employer. When done right, (remember: authenticity, urgency and empathy) a company’s strategy for internal communication on societal issues can drive greater employee engagement, pride and a deeper connection to their core values and purpose.

  • Key Considerations:
    • Companies can’t, and shouldn’t, attempt to take action on every topic. Build a response framework that balances expectations to respond with a company’s core values, strategy and needs of the business
    • Set guidelines for the level of response required: go all in and lead on certain issues, participate or simply prepare for others, and stay silent when appropriate
    • Creating an internal taskforce made up of key stakeholders (communications, HR, crisis response team, etc.) can ensure and consistent messages that align with the overall response strategy
    • Ensure internal communications are consistent with what, if anything, is being shared externally

Matching Words to Action: In the landscape of “woke-washing,” or appearing socially conscious without any substance, companies are under scrutiny of falsity when their words aren’t backed up by meaningful action. Messages of “we stand” or “we are committed” should be followed by proof points of tangible examples, goals and progress of that commitment (i.e., medical benefits, remote-working adjustment, mental health support) and/or providing resources for employees to make an impact should they chose (i.e., internal surveys to improve company offerings, sharing donation information and/or matching donations).

  • Key Considerations: In addition to potentially identifying new ways/benefits to provide to employees based on your company’s mission and values (i.e., providing reimbursement for travelling to other states in the case of Roe v. Wade), reinforce and/or revisit existing offerings and re-iterate availability. Doing so provides credibility that the company is proactively supporting its employees while also ensuring that groups who may not agree with social sentiment don’t feel marginalized with new offerings that may not be aligned with their personal beliefs.

After an internal statement is made to employees, the next step will be to consider external communications. We will explore considerations of external engagement, and the various levels, in Part 2 of this series.

Whether speaking about Roe v. Wade or any other important social issue, companies that are authentic in their approach, demonstrate an understanding of stakeholder needs, and a commitment to keeping employees apprised of company positioning/offerings, will be positioned to not only weather any storm but come out stronger on the other side.

May is Women’s Health Month, and as a Women’s Business Enterprise National Council (WBENC)-Certified Women’s Business Enterprise, Green Room is always exploring new ways to strengthen our commitment to and support of the health and wellbeing of our team.

Last month, we were thrilled to roll out a new employee benefit: Green Room’s Health and Wellness Fund. Created with the goal of supporting employees’ health and well-being in a way that is tailored to their unique needs, the fund provides each team member with the same allotted reimbursement amount for health-related expenses across the categories of fitness and wellbeing, self-care and general health. Green Room leaders aimed to go beyond the status quo of health insurance, employee assistance programs (EAP) and other offerings, as the fund offers the flexibility to support additional health and wellness services and resources that are best suited for each individual.

John Callandrello, Green Room’s Controller who led this initiative, provided his perspective:

Wellness looks different for each of us, which is why Green Room leadership wanted to provide an inclusive option that reflects the diverse ways our team likes to stay active, de-stress, reset and practice self-care. The fund’s reimbursable list is broad, including gym memberships, exercise equipment, therapy, meditation apps, chiropractors, massage therapy and much more.

We aim to stay ahead of the curve with trends and pioneer different offerings to support our employees, especially as retention continues to be top-of-mind for many companies. COVID-19 changed peoples’ daily routines and this fund helps our employees focus on their whole person by adding to the existing benefits, PTO and sick days Green Room provides.

As a life-long athlete, I plan to use the program to reimburse my visits to the regenerative center where I receive stem cell injections that repair cartilage and help my knee pain. The fund gives me a way to try innovative solutions for my particular needs and alleviating some of the cost associated with receiving these treatments.

Green Room’s benefits help me keep health top of mind and our Health and Wellness fund is just one more way we further our commitment to supporting our employees as we continue to grow and remain competitive in the healthcare communications industry!

Advocacy for rare diseases is at the core of Green Room Communications, and Rare Disease Day (RDD) gives us the opportunity to reflect on how we can spread awareness for people impacted by rare diseases. At Green Room, advocating for people with rare diseases is a part of our overarching mission of keeping patients and caregivers top of mind in our healthcare communications work. To recognize RDD, we asked our team to share why raising awareness for rare diseases is so important to them – starting with our agency founder’s Deborah Fowler and Karen Carolonza who have close ties with the rare disease community both personally and professionally.

Deborah Fowler, Founding Partner, explains that “A disease is only rare until it happens to you. Then, it becomes the center of your universe. You realize how simple questions, such as ‘What can you tell me about this disease? Are there any treatments? What will the future hold?’ many times have no answers. Having lived this scenario, raising awareness about rare diseases and empowering rare voices have become my passion. It is also another way that we embody diversity, equity, and inclusion. DE&I isn’t only about race, gender, and ethnicity. It’s about giving a voice to underserved and underrepresented populations. This includes patients with rare diseases, as they often feel excluded, alone, and misunderstood. Education is one of the most important ways that we can realize health equity as a society, by empowering the rare among us which can lead to research, treatments and more importantly, hope for a brighter future.” Deb is also the founder of Soft Bones—a non-profit foundation that provides information, education, and support for people living with hypophosphatasia (HPP), their families, and caregivers—which was born out of her son’s journey with the rare bone disease, and ultimately played a key role in bringing the first FDA-approved treatment for HPP to patients.

For Karen Carolonza, Founding Partner, shares that “Raising awareness of rare diseases is so important to me because unlike more common diseases that impact many families, there is a big gap in understanding how to treat them and why. Because they are ‘rare,’ these diseases do not get the same attention in the public eye and therefore advocates must fight harder for recognition, funding, education and ultimately, patient care.”

For Heather Rose, Senior Vice President, helping patients became her “why” after working on the first-ever awareness campaign for the rare disease pulmonary arterial hypertension (PAH). “At my first job, I had the chance to speak one-on-one with patients and caregivers impacted by PAH. Those conversations were eye-opening. There is one young woman I will never forget. She was in her early 20’s, like me at the time, and was a gifted opera singer. Despite needing two double-lung transplants, she continued to be a warrior who lived life to the fullest. Medicine extended her life 15 years after diagnosis. Medicine made by companies that need communications support as they innovate for patients in need. I get to be part of that process, and when I step back and remember that, it reaffirms that I am absolutely living my purpose to help others.”

Allison Pishko, Senior Vice President, shares that she learned firsthand how the role of the caregiver is often unappreciated and underestimated – even more so in the rare disease community. “By definition, when someone you love is impacted by a rare disease, there are so few people that truly understand your journey and challenges. Working in healthcare communications gives us the opportunity to help create communities of caregivers who can share information, support and empathy. Joining some of these groups as a caregiver myself, has provided me with knowledge and an invaluable community. #LHON”

Maura McBride, Vice President, shares that “After a rare (or underdiagnosed) condition landed me in the neuro-ICU in my 40s, I set out on a long journey to recover my ability to eat and to walk and to manage my risk factors. My only symptom of the condition was migraines, especially during intense, high-impact exercise. A year later, I learned I had a second rare disease, one that was present at birth but treatable through inexpensive, life-long injections. The scientists who discovered the treatment for pernicious anemia were awarded the Nobel Prize in the 1930s. Awareness of rare disease means hope – for diagnoses, treatments or cures – for the estimated 7,000+ people in the U.S. and their families who are impacted. #FMD”

Julie DeVoti, Assistant Account Executive, shares her experience with family members with amyotrophic lateral sclerosis (ALS), cyclic vomiting syndrome (CVS), dissociative identity disorder (DID) and other undiagnosable afflictions. “I enjoy working in healthcare communications because I help clients reach patients who can use the companies’ products to decrease pain and improve the quality of patient’s and caretaker’s lives,” Julie explains. “We can create awareness campaigns that educate the public on a rare disease and how to advocate for those living with it. RDD is important to me because when each of us educates ourselves and others on rare diseases we can create more inclusive environments.”

At Green Room, we recognize Rare Disease Day as a day dedicated to advocating for patients, caregivers and families who have been heavily impacted by the burden of rare diseases. Beyond our personal connections, we are united as communicators to continue our efforts in bringing additional awareness to, and advocating for, people impacted by rare diseases. To join in raising awareness and supporting the rare disease community, go to RareDiseaseDay.org to learn more.

Year at a Glance – 2021 by the Numbers