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Claudia Hirawat, Executive Chair of VOZ Advisors o

Claudia Hirawat, Executive Chair of VOZ Advisors opening the keynote session at #WorldOrphanUSA sharing guidelines for #patientengagement.

Join @vozadvisors at the World Orphan Drug Congres

Join @vozadvisors at the World Orphan Drug Congress on July 11th-13th in Boston! Claudia Hirawat will be moderating a panel on "Patient Advocacy Trends and Best Practices in Gene Therapy."

She will be joined by expert panelists:
- Pat Furlong, Founding President and Chief Executive Officer, Parent Project Muscular Dystrophy
- Yann Le Cam, Chief Executive Officer, EURORDIS
- Vivian Fernandez,Executive Director of Patient Advocacy, REGENEXBIO
- Christeen Moburg, Vice President Patient Advocacy & Government Relations, Sangamo Therapeutics
- Safiyya Gassman, Senior Director, Policy & Public Affairs, Rare Disease & Gene Therapy, Pfizer

Use discount code: SPN50 for 50% OFF - https://bit.ly/3A10EWA

🔥 Burning ⚡Electric Shocks 🦶🏽 Shooting

🔥 Burning
⚡Electric Shocks
🦶🏽 Shooting Pain
📌Pins and Needles

These are just a few of the ways patients describe their diabetic nerve pain of the feet. Join our Speak For Your Feet Contest and help us create a 4-10 letter memory aid (mnemonic) where each letter can represent key symptoms, actionable next steps and/or potential solutions.

To celebrate, the winning entry will receive a $1000 VISA gift card or a trip for two to Colorado for the American Chronic Pain Association’s 2023 Patient Conference. Additionally, up to 3 randomly selected winners will receive a $100 VISA gift card.

The winning entry will be used in educational resources and other materials to help people who have diabetes, or may have diabetes, remember, better identify and seek care for symptoms of diabetic nerve pain of the feet.

For Official Rules and entry details, please visit www.nervepainandme.com/contest. Entry must be received by October 1st, 2022. The winning entry and three runners up will be announced on or around November 1st, 2022. Must be 18 years of age or older to participate. Promotion is void where prohibited or restricted by law. No purchase is necessary to enter.

It is fair to say that we hoped for an easier 2021

It is fair to say that we hoped for an easier 2021 when compared to 2020. We did, indeed, see significant improvements--the launch of vaccines, children returning to schools, and opportunities to see loved ones in person. But 2021 still brought plenty of challenges, in particular regarding uncertainty. As we close the year, we are concerned over omicron and what challenges this new variant may bring. What other strains will we encounter? Will the pandemic ever come to an end?

In facing uncertainty, we must hold fast to the lessons learned since 2020. Most importantly: we learned that we are more resilient than we knew. This pandemic has resulted in unacceptable losses, but we have made significant progress. We have become stronger and more appreciative of what truly matters in life.

Our wishes for 2022 are that we continue to be strong and #resilient. We hope that we continue to prioritize our values, to practice self-care, compassion, and to be present in the lives we touch.

Here is wishing you hope as we enter the New Year. No uncertainty can conquer our spirit. No challenge can destroy our dreams. We are infinite in our ability to grow.

May 2022 be your best year yet.

#FridaysatVOZ by Claudia Hirawat.

With Thanksgiving behind us and the year-end holid

With Thanksgiving behind us and the year-end holiday season approaching, #gratitude is more present in our thoughts and conversations. Our experience with a global pandemic and the uncertainty it has brought to our lives has in some ways led to an increased appreciation for being healthy. What may be missed, however, is in the role that gratitude can—and does—play in actually supporting #health.

The holiday spirit of gratitude may be fleeting, but many studies have demonstrated that a daily gratitude practice can increase happiness as well as physical health. Choosing to be grateful improves sleep, boosts immunity, and decreases the risk of disease.

As we move through the holiday season and into the New Year, we will do well to continue our exploration of gratitude, and to embrace a daily practice of appreciating the positive aspects of our life. Doing so can create a positive feedback loop for health and well-being. https://bit.ly/3Ihq3Nz

The following articles describe simple exercises for practicing daily gratitude:

- How to Practice Gratitude:
https://www.mindful.org/an-introduction-to-mindful.../
- 13 Most Popular Gratitude Exercises & Activities: https://positivepsychology.com/gratitude-exercises/

#FridaysatVOZ by Jessica Cerullo Merrill.

By definition, a #raredisease is diagnosed in a sm

By definition, a #raredisease is diagnosed in a small number of people. In aggregate, however, more than 300 million people worldwide are living with a rare disease. Rare disease patients often embark on complex medical journeys without knowledge of medical teams, peer-to-peer connections, or adequate emotional support. Living with a rare disease means much more than symptom management — it involves grappling with feelings of isolation and anxiety. Through caring for a family member with a rare disease, I have witnessed first-hand the importance of providing patients with a platform to support others, communicate with the healthcare industry, and propel change in the rare disease space. Patient advocacy holds an unmeasurable power in helping patients regain control and autonomy within their lives. Our work at VOZ often involves rare diseases, and we know that patient engagement—talking directly with people impacted by the disease—results in enrichment of the drug discovery, development, and commercialization.

There are many definitions of #patientengagement, for example, Kristin Carman, director of PCORI, proposed a framework for engagement that can guide intentional and respectful #patientoutreach and activation. She states that engagement must focus on direct patient care, occur on an organizational and governance level, and drive change at a #policylevel. Through this framework patients can work with providers to help guide health decisions, incorporate their experiences into pharmaceutical and hospital designs/developments, and impact policies and laws that transform #healthcare. Whether through this framework or another, many organizations are actively including patients in their conversations and recognizing the immense value of their voices. Here at VOZ, we focus on involving patients at each step of the drug development continuum, supporting our vision that all medical products should benefit from the perspective of patients.

Patients are speaking, so let us listen. https://bit.ly/2Yn3Bk0

Women’s rights are under attack in the US. The l

Women’s rights are under attack in the US. The latest example is the passage of Texas Senate Bill 8, banning abortion as early as six weeks and allowing citizens to sue abortion providers who violate the law. This sets the stage for another Supreme Court challenge to Roe v Wade, the precedent for abortion cases since 1973. The majority conservative Court has already caused great panic in the women’s health and #reproductiverights community by refusing to block this unconstitutional law.

#Abortion is highly debated, but one thing should not be controversial: women have the right to have a voice in their own healthcare. They deserve control over their lives and must be allowed to make independent decisions. Reproductive rights and associated decisions are an important part of healthcare. Forced pregnancies and unsafe abortions can lead to such negative outcomes as self-inflicted harm, deteriorating mental health, and financial hardship. A woman’s right to choose is an exercise of her right to health and privacy.

This new law—and others that attack the rights of women—demonstrates the importance of everyone standing up for equal rights for women. One step is to support legislation such as the Women’s Health Protection Act, to preserve autonomy and health. https://bit.ly/2ZYgbqG

#FridaysatVOZ by Nicole Hajek, MPH.

Last week I had the honor and pleasure to facilita

Last week I had the honor and pleasure to facilitate a discussion with eight women diagnosed with HER2 positive (HER2+) metastatic breast cancer (MBC). As each shared her unique story, I reflected on both how far we have come since the first targeted treatment for HER2+ MBC was approved in 1998, and the progress still needed. Now, more than 20 years since this monumental innovation, multiple anti-HER2 targeted therapies are available, including novel agents and combination therapies. Still, no cure exists, and for many the impact of treatment on quality of life is daunting. New relevant biomarkers such as PIK3CA and PD-L1 have been identified and drugs developed to target these markers, yet many people are unaware of these biomarkers, and testing is not routinely offered. Researchers continue to seek solutions – more than 300 trials are currently underway for MBC – yet as we heard from our patient advisors, trials are challenging to find and interpret. As we close out Breast Cancer Awareness Month 2021, let’s celebrate our progress and put our energies towards closing the gaps where we are able.

Check out https://bit.ly/3GeoFKE for a directory of MBC clinical trials and https://bit.ly/3pALGRQ for notable updates in breast cancer research from the 2021 ASCO meeting.

VOZ Advisors is honored to announce the appointmen

VOZ Advisors is honored to announce the appointment of Kim Thiboldeaux as an entrepreneur-in-residence at the firm, leading select efforts in patient engagement, advocacy, and diversity and inclusion. Kim is a renowned executive, thought leader, and author, who most recently served as CEO of the Cancer Support Community (CSC) for 20 years. CSC is a global nonprofit network that operates at 175 locations, including CSC and Gilda's Club centers, and in multiple hospitals and cancer clinics, providing over $50 million yearly in free support and navigation services for patients and families.

Kim’s service includes appointments to the nation’s premier panels on cancer, including an appointment by National Institutes of Health director Dr. Francis S. Collins to the Novel and Exceptional Technology and Research Advisory Committee. She brought attention to inequities in our health care system while serving on the Biden Cancer Initiative’s Board of Directors and has worked with Stand Up To Cancer to focus on cancers affecting underrepresented populations.

Kim has continued to serve patients in need through leading numerous initiatives, including an emergency fund she launched at CSC in 2020 in the wake of the COVID-19 pandemic that provided financial relief to thousands of patients affected by the economic downturn. As part of a two-year collaboration while at CSC, Kim partnered with Airbnb to offer more than 3,000 patients in need free housing while traveling for treatment.

Kim’s expertise and insights are highly sought after. She has interviewed with the Wall Street Journal, The Washington Post, PBS, Philadelphia Inquirer, WebMD, and has done speaking engagements, including a TEDx Talk and White House convenings. She is the author of the newly released, full-length book, Your Cancer Map- Navigating Life With Resilience, Foreword by Dr. Jill Biden, and hosted a weekly internet radio show for more than a decade, Frankly Speaking About Cancer, focused on informing and inspiring people to live well with cancer.

Every year in October, pink ribbons make an appear

Every year in October, pink ribbons make an appearance as some patient organizations and many companies promote #breastcancerawareness. Women living with breast cancer, survivors, and families who participate in walks and other events are grateful for the sense of community this brings, as well as the opportunity to support awareness and raise funds for research. But this sentiment is not universal.

The recent New York Times article “For some breast cancer survivors, October is the cruelest month” explains how, for some, breast cancer awareness month can have a re-traumatizing effect. For others, the marketing images of happy people participating in fun-runs contrast starkly with their reality of living with metastatic disease. The piece provides advice for survivors to get through the month and how friends and family can be supportive.

At VOZ, we often work with our clients to amplify various awareness days. For me, the article underscored the importance of being informed by a variety of patient perspectives, and understanding that no one approach will work for every person. We need to constantly push ourselves to ask, “Where are we missing the mark? What should we be doing to support you?”

#FridaysatVOZ by Margaret Arbogast.

#breastcancerawarenessmonth

I recently spoke with a mother of three who is liv

I recently spoke with a mother of three who is living with type 2 diabetes. She has been living with the condition for two years, and the most recent A1C value she knew was measured over a year ago. She missed the last two appointments with her provider, was inconsistent with her glucose monitoring, and for a long time misunderstood what a healthy target blood sugar level was. Her inability to make informed health decisions is a clear indication of low health literacy.

 

October is Health Literacy Month. My interaction was a timely reminder that 90 million Americans lack the ability to obtain, process, understand, and use health information in a way that is necessary for making appropriate care-related decisions.

Health literacy is not a reflection of intelligence, but of barriers associated with social determinants of health. This might include lack of equal access to health education, disparities related to income, institutional racism, limited health care availability in rural communities, and much more.

 

The National Action Plan to Improve Health Literacy was developed to create a society in which individuals feel empowered to engage effectively with their disease management and self-care. Here are some ways you can get involved in your own community: https://bit.ly/3mGy7gH

#FridaysatVOZ by Nadia Louri, Associate of Client Services at VOZ Advisors.

Recently, VOZ did something unique. Under our owne

Recently, VOZ did something unique. Under our owner’s leadership, we went on a retreat to a beautiful Vermont inn. The purpose was not work, but to reconnect. We had not all been together in person for one and a half years and had added colleagues to the team who we had yet to meet in person.

I often look up definitions of words I use. Surprisingly “retreat” means “to withdraw or draw back, often to avoid danger”. Our version seemed the exact opposite. But after consideration, I realized we were, in fact, avoiding danger. We were avoiding the danger of isolation, of believing work alone could sustain us. The danger of forgetting that we also need to laugh, share meals, hike, and breathe the fresh autumn air together. To remember others were not as lucky, and to use the good fortune of being together to recommit to each other and the work toward which we put so much energy.

I know from personal retreats that opportunities for silence and idea exchange renew me. VOZ plans more time like this, to work together and to find ways to always stay connected and recharge.

This Sunday is #WorldMentalHealthDay. If you are physically isolated due to COVID, or feel disconnected because of differences in race, religion—even politics, perhaps this is the time to take a retreat.

#FridaysatVOZ by Ellen Coleman.

We welcome Sarah Tencer as a Director of Client Se

We welcome Sarah Tencer as a Director of Client Services and Nicole Hajek, MPH as an Associate of Client Services.

Sarah brings with her 10 years of experience working in the nonprofit and #patientadvocacy space, including roles at the Muscular Dystrophy Association and Hemophilia Federation of America. These experiences have provided her with a strong foundation in understanding the importance of the patient voice and incorporating it into organizational strategies.

Nicole brings with her considerable experience in health policy and management, as well as regulatory experience in clinical research. Her professional and academic endeavors, including her work at Sachs Policy Group, Auxilius Pharma, and Massachusetts General Hospital, have solidified her career aspiration to improve and promote healthcare access and equity.

Tim Turnham and Katherine Krieger recently hosted

Tim Turnham and Katherine Krieger recently hosted a roundtable discussion at World Orphan Drug Congress on ‘Diagnostics and Newborn Screening: Opportunities for Prioritized Collaborations with Patient Organizations.’ Participants were asked the question “How should patient advocacy groups and biopharmaceutical companies work together to promote newborn screening and diagnostics testing for rare diseases?”

Learn what they had to say in new report by Tim Turnham, Vice President of Client Services at VOZ Advisors. - bit.ly/3up5g49

With #WorldMentalHealthDay coming up this month, I

With #WorldMentalHealthDay coming up this month, I’d like to address the question: how do we care for our mental health during a pandemic? Mental health is already incredibly nuanced and can be impacted by numerous factors in our lives, but COVID-19 has added stress for many. Resources may be harder to find as in-person community and support events have diminished. For the past six years I worked directly with patient advocacy organizations and know how valuable these opportunities for connection are—especially for those with unique life experiences.

But resources, support, and community are still out there—it just may be a little harder to find. If you are unsure of where to start, I’ve compiled a list of resources that I hope will be helpful. May we also take this opportunity to reach out to those we know who may be struggling, and to spend some time nurturing our own mental well-being.

#fridaysatvoz by Sarah Tencer, Director of Client Services at VOZ Advisors

Connecting clients with patients and/or their fami

Connecting clients with patients and/or their families is the most meaningful part of my work at VOZ. These meetings provide rich insights, surprising “aha!” moments, and actionable takeaways for teams. Our clients are deeply grateful to the advisors they meet and are enthused to find ways to use the insights to benefit their work and, ultimately, the patient community.

For patient and #carepartner advisors, however, the experience can be quite different. While some feel empowered, others may feel both emotionally and mentally drained after such conversations. They are, after all, describing a major part of their life, and some of the topics can be triggering.

The disease or condition that interests our clients is often devasting to the #patients or caregivers with whom we speak, permeating every aspect of their life. People can be brought back in an instant to the trauma of #diagnosis and treatment, even months or years after they are no longer facing acute challenges.

The knowledge and insights patients provide our clients is valuable. The most amazing gift, though, is their willingness to become vulnerable and to walk through what is likely the most challenging part of their life with complete strangers, all in an effort to help other patients have better outcomes.

#FridaysatVOZ by Amy Price, Director of Client Services

I recently spoke with a patient who was diagnosed

I recently spoke with a patient who was diagnosed with a condition at 9-years-old. He shared that his doctor at the time was direct and clear, using child-friendly language; he left feeling grateful to his amazing care provider.

Children with health issues face many challenges around understanding their illness. Family members and caregivers are often responsible for explaining a new diagnosis to a child. As a result, these sensitive conversations are often handled by a family member who might be in the process of learning new medical terms or intricate aspects of a condition.

Collaborations are taking place between patient advocacy groups and biopharmaceutical companies to create tools and resources for family members so they can better understand and explain a diagnosis to their children. From storybooks, digital cartoons, and avatars, the use of digital media is allowing children to feel better represented and understood. As these collaborations continue and innovation in digital technology evolves, these tools can help clinicians, families, and caregivers better engage in productive conversations.

As an example, check out Ruby by Horizon Therapeutics, explaining cystinosis in a digestible format through a cartoon adventure! - https://bit.ly/3tI47nW

#FridaysatVOZ by Katherine Krieger, Director of Client Services

A recent Centers for Disease Control and Preventio

A recent Centers for Disease Control and Prevention (CDC) study found that among pediatric populations #COVID19-related “emergency department visits and hospital admissions in a 2-week period in August 2021 were higher in states with lower population vaccination coverage and lower in states with higher #vaccination coverage.”

The CDC states the public health implication of this data is that “community vaccination, in coordination with testing strategies and other prevention measures, is critical to protecting pediatric populations from SARS-CoV-2 infection and severe COVID-19.”

With the back-to-school season upon us in the United States and with children under the age of 12 not having access to the COVID-19 vaccine, it remains important that we collectively do our part to protect them. This study findings remind us that #vaccines are an effective tool to support a safe and successful school year.

Here are several resources to help you talk to community members about vaccinations.
- https://health.clevelandclinic.org/how-to-talk-to-someone-about-vaccine-hesitancy/
- https://www.cdc.gov/coronavirus/2019-ncov/vaccines/talk-about-vaccines.html
- https://www.cdc.gov/vaccines/covid-19/hcp/pediatrician.html

#FridaysatVOZ by Jessica Cerullo Merrill, VP of Client Services.

“I get scared when I think about what will happe

“I get scared when I think about what will happen to my future, my goals, and my dreams for my future.” – 14-year-old girl, Afghanistan

Freedom of movement, equal access to #healthcare, and equal opportunities to education are basic #humanrights. For decades—perhaps centuries—these rights were denied for Afghan women and girls. In the past two decades women in #Afghanistan have made astounding progress, leading to unprecedented freedom and opportunity. According to USAID, in 2020 of 40% of Afghan’s 9.5 million students were girls. Women’s rights were enshrined in the constitution in 2004, and by 2019 women held nearly 30% of seats in national parliament. Through international aid, women entered law, government, and media, and saw improved social, economic, and health outcomes.

As we witness the Taliban take over the country and its capital Kabul, I see a desperate need to speak up and #advocate for women and families on an international level. Surveys of past repression have captured the decline of women’s physical and #mentalhealth, with women expressing symptoms of PTSD, anxiety, depression, and declining mental health. At this critical time, we must do our part to ensure their futures. Here are some ways you can get involved.

#FridaysatVOZ by Juliette Rothera.

On August 23, the FDA granted full approval for Pf

On August 23, the FDA granted full approval for Pfizer/BioNTech’s COVID-19 vaccine. This is the first of the COVID-19 vaccines to transition from Emergency Use Authorization (EUA) to full authorization. What does that mean?

In analyzing effectiveness data, FDA found this #vaccine 91% effective across approximately 40,000 trial participants in preventing COVID-19 and potentially serious outcomes including hospitalization and death.

Noted in the Washington Post, this is the fastest vaccine approval in FDA history, a testament to the diligence of the sponsors and to how seriously the FDA views the #COVID19 public health crisis. The prioritized review process took less than four months from when Pfizer filed for licensing.

For workplaces, schools, and government agencies, full approval may mean mandatory vaccinations. For insurance companies, the approval may give payers a rationale for not covering COVID-19 treatment or hospitalization claims for those that are unvaccinated.

For everyone needing protection from COVID-19, it is a huge step. We hope individuals awaiting this approval will heed the call for vaccination. It is not just for your protection, it is a critical public health issue.

To learn more, please visit: www.fda.gov.

#FridaysatVOZ by Richard Balagtas