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This Rare Disease Day, Bionews is bringing together voices from across the rare disease community for a weeklong series of powerful conversations with Dr. Al and our incredible moderators.
Rare Disease Day is about amplifying the voices and experiences of those living with rare conditions, and this year we’re bringing that conversation to the forefront with “Keepin’ It Rare”, a 5-part video series exploring the emotional and mental health challenges unique to the rare disease community.
In partnership with Dr. Al Freedman, one of the world’s leading therapists specializing in rare diseases, this series dives into real, 1:1 conversations with patients, caregivers, and community advocates. These discussions explore everything from navigating relationships and self-advocacy to building resilience and finding support.
About the National Organization for Rare Disorders >>
About Bionews >>
Day 1
Introducing
Dr. Al
with Kiersten Riggs
Day 2
The Patient Experience
with Kerry Wong
Day 3
The Caregiver Journey
with Danita LaShelle
Day 4
The Rare
Community
with Brad Dell
Day 5
Questions from the Community
with Brandi Lewis
Day 1
Introducing
Dr. Al
with Kierstin Riggs
Day 2
The Patient Experience
with Kerry Wong
Day 3
The Caregiver Journey
with Danita LaShelle
Day 4
The Rare Community
with Brad Dell
Day 5
Questions from the Community
with Brandi Lewis
Day 1: Introducing Dr. Al featuring Kiersten Riggs, Friedreich’s Ataxia Patient Advocate.
Kiersten kicks things off with Dr. Al Freedman, one of the country’s leading psychologists who specializes in therapy for patients living with rare disease. Dr. Al’s emphasis on helping patients with rare diseases stems from his personal experience in raising his son Jack, who was diagnosed with spinal muscular atrophy or SMA.
Watch the video to learn more about how Dr. Al arrived at where he is today, how treating patients with rare disease is unique, what he has grown to appreciate about it, and some key questions for patients to ask when seeking a therapist.
Day 2: The Patient Experience featuring Kerry Wong, Scarcoidosis Patient Advocate and Bionews Patient Advisory Board member.
Kerry continues the conversation with Dr. Al, centered around the rare disease patient’s unique perspective and lived experiences as they pertain to mental health.
She asks Dr. Al questions including how to get friends and family to better understand the rare journey, tips for expressing how hard life is with a rare disease to others, how well-meaning words of encouragement can hurt, and how to live authentically as a rare patient.
Day 3: The Caregiver Journey featuring Danita LaShelle, Sarcoidosis Patient Advocate and mother.
As so many rare disease patients know, the role of the caregiver is a critically important piece of the puzzle. Danita joins the series to speak with Dr. Al about the unique challenges caregivers face.
Tune into this installment of Keepin’ It Rare to hear Dr. Al’s expert advice on topics such as how to be empathetic toward a loved one without fully understanding their experience, knowing when to be resilient and when to lament, how to deal with feeling overwhelmed, and how to prepare a child patient for a life of independence without feelings of abandonment.
Day 4: The Rare Community featuring Brad Dell, Cystic Fibrosis Patient Advocate and Bionews Patient Advisory Board member.
Watch as Brad leans on Dr. Al for advice including how to manage fear of joining your own rare disease community, how resilience and empathy factor in, the psychological benefits of sharing stories within your rare community, and the unique benefits of befriending people in other rare disease communities than your own.
Day 5: Questions from the Community featuring Brandi Lewis, PNH Patient Advocate and Bionews Patient Advisory Board member.
On this final Keepin’ It Rare video, Brandi asks Dr. Al questions fielded from the community.
The questions cover a wide range of topics including ways to manage spiraling about the future, ways to stop worrying about public perception, how to manage answering honestly when people ask how you’re doing, and accepting a new identity after a rare disease diagnosis.
About Dr. Al Freedman
Al Freedman, PhD, is a psychologist, educator, and rare disease advocate with more than two decades of experience working with individuals and families affected by rare diseases and disabilities. As one of the world’s leading therapists specializing exclusively in the rare disease patient space, Dr. Al is uniquely equipped to support families navigating complex medical conditions and the professionals who serve them.
Inspired by his personal journey as the father of Jack, who lived with spinal muscular atrophy for 26 years, Dr. Al draws upon the invaluable lessons Jack taught him, alongside his professional training and early experience as an educator, to provide counseling and consultation. He works with families, advocacy organizations, pharmaceutical companies, healthcare organizations, and schools to create meaningful support systems and impactful change within the rare disease community.
Dr. Al with his son, Jack, in 2020.
“Patients and families affected by rare disease
face so many complicated emotional challenges.
I feel honored to serve our rare disease community by sharing both my professional expertise as a psychologist and my lived experience as a father. We are all in this together.”
— Dr. Al Freedman
2024 HCU Conference Keynote Address, presented by Dr. Al Freedman
In his keynote address at the 2024 HCU Conference, Dr. Al reflects on resilience, hope, and the unique “rare gifts” that come with life’s challenges. Watch now to learn more about his journey and the profound insights he brings to the rare disease space.
More from Dr. Al
Every day is a gift: interview with Dr Al Freedman RARE dad and counselling psychologist
Meeting the Challenge of Rare Disease in the Family: 25 Years of Lessons Learned – Dr Al Freedman
Dr. Al on Supporting the Mental Health Needs of the Rare Disease Community
2022 SFN Dads Virtual Conference – Dr. Al Freedman on Combating Depression.
About the National Organization for Rare Disorders (NORD)
With a more than 40-year history of advancing care, treatments, and policy, the National Organization for Rare Disorders (NORD) is the leading and longest-standing patient advocacy group for the 30 million Americans living with a rare disease. An independent 501(c)(3) nonprofit, NORD is dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 340 patient organization members, is committed to improving the health and well-being of people with rare diseases by driving advances in care, research, and policy.
Bionews is a digital health solutions company dedicated to empowering more than 50 rare disease communities with trusted information, news, and connections. Since 2013, we’ve been committed to serving patients and elevating their voices. Driven by our motto, “For Rare, By Rare,” over half our team has a personal connection to rare diseases.
This firsthand experience fuels our commitment to providing accurate and up-to-date information tailored to specific needs. With over 500,000 registered members, Bionews fosters a platform for connection and learning, empowering people living with rare disease to navigate the complexities of their rare condition.
Unmatched reach: With 1M+ unique monthly visitors, 250K+ followers across social channels, 500K+ n sewsletter subscribers, and 50+ conditions covered, Bionews’ access to patient communities is truly rare.
Industry-leading impact:
Bionews’ campaigns consistently outperform benchmark, delivering impressive results:
105x Targeting Multiple | #1 out of 6 Publishers |
8x Above Benchmark | Condition: Myasthenia Gravis
72x Targeting Multiple | #1 out of 9 Publishers |
19x Above Benchmark | Condition: SMA
37x Targeting Multiple | #2 out of 5 Publishers |
8x Above Benchmark | Condition: Parkinson’s Disease
Connect with Bionews
To learn more about engaging with Bionews’ rare communities, please contact us at [email protected] or fill out the form below and we will reach out to you shortly.