2026 Annual Conference
Advancing Rare Together
Education, Resources, and Support for the Rare Disease Community
We want our conference to be accessible to everyone in the rare disease community. Patients and caregivers who may need financial assistance with registration are invited to apply for a scholarship to attend our 2026 Annual Conference at no cost.
We encourage you to apply—we’d love to have you join us!
Why Attend?
Gain valuable insights through interactive workshops and expert-led discussions.
Master the organization of critical medical information for improved care.
Develop key strategies for emergency preparedness and homecare advocacy.
Expand your network by connecting with fellow attendees, exhibitors, and industry professionals.
Make an impact by learning how to influence rare disease policies through active engagement.
Meet The Speakers!
Meet the inspiring speakers and panelists joining us for Advancing Rare Together! Through professional expertise, lived experience, and personal stories, they will share valuable insights and practical guidance to help strengthen, inform, and empower the rare disease and chronic illness communities.
Dr. Sarah Holbrook
The Path Forward: Persistence, Purpose & Community
Sarah Holbrook, PhD is a biomedical scientist, rare disease advocate, and science communicator whose passion for rare disease began in childhood after meeting a young boy with Batten disease. She went on to earn her PhD in Biomedical Sciences and build a research career focused on rare genetic, mitochondrial, and neuromuscular disorders.
Today, Sarah volunteers with Rare New England and leads Knot Alone, a project providing free handmade toys to children with rare and medically complex conditions. Featured in a FUJIFILM documentary about her journey in science, Sarah will open Advancing Rare Together by sharing how persistence has shaped her path through education, research, advocacy, and life’s unexpected challenges.
Biomedical Scientist & Rare Disease Advocate
Storytelling for Rare Advocacy
Dr. Jennifer J. Brown, a geneticist and rare disease parent, will share how personal storytelling can be a powerful tool for rare disease advocacy and healthcare change. Drawing from her experience as the mother of two daughters born with PKU and her memoir, When the Baby Is Not OK: Hopes & Genes, Dr. Brown will explore how lived experiences can inspire awareness, advocacy, and policy change.
Meet Dr. Brown in the Rare Exploration Experience! Attendees will have the opportunity to connect with her personally, learn more about storytelling for rare disease advocacy, and purchase a copy of her book.
Mentor & Author National PKU Alliance (NPKUA)
Dr. Jennifer J. Brown
Meet Our Community Voices Panel!
“Building Community Through Storytelling, Advocacy & Connection” will bring together individuals with lived experience in the rare disease community to share their personal journeys and perspectives on the power of connection, peer support, and advocacy.
Founder & Director Imperfect JOY® / Rare Rebels™
Melody Joy Paine
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Melody Joy Paine is a storyteller, advocate, and entrepreneur who amplifies rare disease voices through photography, filmmaking, and narrative journalism. As founder of Rare Rebels™ and Imperfect JOY®, she creates human-centered stories connecting lived experience, science, advocacy, and culture.
Active across patient advocacy, research, and industry, Melody also supports strategic communications and corporate engagement for N=1 Collaborative, helping advance individualized medicine and patient-centered innovation. In 2022, she received the Sony Alpha Female+ grant recognizing women pushing creative boundaries in photography and filmmaking.
Lead Clinical Research Associate & Assistant Professor University of Connecticut Glycogen Storage Disease Program & Disorders of Hypoglycemia Connecticut Children’s Hospital
Julieta Bonvin Sallago, MD, MS, CCRP
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Julieta Bonvin Sallago, MD, MS, CCRP, is a physician and clinical researcher dedicated to advancing care for children and families affected by rare and inherited diseases. She is a Lead Clinical Research Associate at Connecticut Children’s and Assistant Professor of Pediatrics at the University of Connecticut.
Originally from Argentina, Julieta trained in medicine and pediatrics at the University of Buenos Aires and holds master’s degrees in pediatric neurology and neurodevelopment and inherited metabolic disorders. She is also studying to become a genetic counselor. Her work focuses on rare disease clinical trials and glycogen storage diseases, connecting patients and families with new treatments, research opportunities, and pathways toward diagnosis.
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Krista Brack is a rare disease advocate and leader of the Rhode Island EDS Awareness and Support Group, where she helps create connection, support, and community for individuals and families affected by Ehlers-Danlos syndrome. Passionate about raising awareness and supporting others through shared lived experience, Krista is dedicated to helping members of the rare disease community feel seen, heard, and less alone. She lives in Warwick, Rhode Island, with her husband and their cats, and together they enjoy traveling and exploring new places.
RI EDS Support Group Leader Rare Disease Advocate
Krista Brack
Meet The Rare Exploration Experience Exhibitors!
Meet the organizations, advocates, and community partners joining us for Advancing Rare Together! Our exhibitors offer valuable resources, expertise, and support to help individuals and families across the rare disease and chronic illness communities feel informed, empowered, and connected.
Annette Hines, Esq.
Special Needs Law Group of Massachusetts, PC.
An Advocate for All
Annette Hines is an attorney, author, advocate, and founder of Special Needs Companies, with more than 20 years of experience helping individuals with disabilities and their families navigate special needs planning, public benefits, trusts, guardianship, and long-term care planning. As a mother with lived experience in the disability and rare disease community, Annette brings both professional expertise and a deeply personal perspective to her advocacy.
Stop by to meet Annette and learn about resources that can help families plan, advocate, and build a more secure future for their loved ones.
Arjun Patel
Creativity in Action: A Young Advocate for VLCAD
Arjun Patel is a high school student using creativity and interactive education to support families navigating rare diseases and complex feeding needs. His goal is to make challenging mealtimes feel less isolating while giving patients and caregivers practical tools, knowledge, and connection.
At his exhibit, attendees can explore VLCAD through an interactive food-matching card game featuring common crisis situations and practical solutions. Visitors can also browse a patient-perspective cookbook with anthropology notes and discover educational resources designed to make nutrition, daily disease management, and travel more approachable.
Stop by to play, learn, spark conversations, and gain a better understanding of life with VLCAD—all while celebrating the next generation of rare disease changemakers!
Young Rare Disease Advocate & Creator
Paige Ryan, PT, DPT
The Invisible Load We Share
Paige Ryan, PT, DPT, is a physical therapist and founder of Foundation First Physical Therapy, where she supports families of disabled, neurodivergent, and medically complex children. Through pediatric physical therapy, caregiver coaching, accessibility, education, and advocacy, Paige works to make everyday life more manageable and sustainable for the whole family.
At her exhibit, experience “What Are You Carrying That No One Sees?”—an interactive installation exploring the invisible responsibilities, emotions, challenges, hopes, and victories we carry. Add your own experience to a collaborative ripple mural, then visit the “Take What You Need Today” bowl for a message of encouragement or support.
Come leave something you’ve been carrying, take something you need, and discover just how much of the invisible load we share.
Founder, Foundation First Physical Therapy
From Experience to Education
Meet Vanessa Junkins, RN, MBA, a nurse with 19 years of experience caring for patients with chronic kidney disease—and a rare disease mom to two young adults with CPT II deficiency and an older son with New Daily Persistent Headache. Her professional and personal experiences have inspired her to explore how education can better support families navigating fatty acid oxidation disorders (FAODs).
Through the Healthcare Experience Lab at Dartmouth-Hitchcock Medical Center, Vanessa is researching gaps in FAOD education and plans to gather perspectives from patients, caregivers, and healthcare professionals to help identify unmet educational needs.
At her exhibit, attendees can explore what she has learned so far and, most importantly, share their own voices. What do you wish you had known about your FAOD? What questions do you still have about its impact on your future health?
Registered Nurse & Rare Disease Researcher
Vanessa Junkins, RN, MBA
David Leeds
Turning Rare Disease Experience Into Advocacy
Founded by Connecticut rare disease patient and advocate David, CT Rare Advocate turns lived experience into education and awareness. Inspired by his own journey with Hereditary Angioedema (HAE) with Normal C1 Inhibitor and raising a child with Specific Antibody Deficiency, David created a platform dedicated to making rare diseases a little less invisible.
At his exhibit, explore the Rare Disease of the Day project, which has highlighted more than 570 rare conditions and counting! Browse the card library, learn how the project comes together, suggest a disease for a future spotlight, and discover how one person can make a meaningful difference through advocacy.
Rare Disease Advocate
A Wall of Hope
The APDS Rare Disease Coalition supports individuals and families affected by Activated PI3K Delta Syndrome (APDS), an ultra-rare primary immunodeficiency. Through education, advocacy, awareness, and community connection, the Coalition works to amplify patient and caregiver voices and ensure families know they are rare, but never alone.
Stop by their exhibit to learn more about APDS, explore educational and advocacy resources, and add your voice to the interactive “Why I Advocate” Wall of Hope! Visitors can share what inspires their own rare disease advocacy, pick up an awareness sticker, and celebrate the power of connection across the rare disease community.
Vice President & Director of Advocacy and Awareness, APDS Rare Disease Coalition
Tara O’ Connor
When Common Conditions Present in Uncommon Ways
Pamela Bove, an endometriosis patient, advocate, public health professional, and healthcare administrator, will present “Endometriosis: Common Disease, Rare Presentations.” Drawing upon her lived experience and extensive advocacy work, Pamela will explore how endometriosis can occur in unexpected locations, mimic other conditions, and remain unrecognized when it falls outside traditional clinical understanding. Her exhibit highlights the importance of multidisciplinary thinking, stronger patient and provider education, and greater awareness of the knowledge gaps that contribute to misdiagnosis and diagnostic delays.
VP & Fundraising Chair Director of Community Relations
Pamela Bove, MPH(c)
Dr. Maya Doyle
Professor of Social Work
Sean Ferguson
Social Work, Rare Disease & the Power of Support
Dr. Doyle, Professor of Social Work at Quinnipiac University, and MSW student Sean Ferguson will highlight the important role social workers can play in supporting individuals and families impacted by rare and genetic conditions.
Through an interactive activity, Maya and Sean will invite attendees to explore their experiences with—and the need for—social work support throughout the rare disease journey. Drawing on Dr. Doyle’s extensive work in pediatric health, rare disease research, and patient advocacy, their session will highlight how social work can strengthen psychosocial support, advocacy, education, and patient-centered care.
MSW Student
Creating Sweet Moments for Families
Icing Smiles is a nonprofit organization bringing joy, celebration, and lasting memories to children impacted by critical illness and their families. Through a nationwide network of talented volunteer bakers known as Sugar Angels, Icing Smiles provides custom celebration cakes and other sweet treats designed to make life’s special moments a little sweeter.
Their work is a beautiful reminder that even during difficult journeys, every child deserves a reason to celebrate.
Advancing Care & Connection for the MG Community
The Myasthenia Gravis Foundation of America (MGFA) is the largest patient advocacy organization dedicated solely to myasthenia gravis (MG), a rare autoimmune neuromuscular disease that causes fluctuating muscle weakness and can affect everyday activities such as seeing, swallowing, walking, and breathing. Through education, advocacy, research, and community support, MGFA works to improve the lives of people living with MG while advancing progress toward better treatments and a cure.
Visit the MGFA table to learn more about resources available to patients and families, including support groups and peer connections, newly diagnosed patient materials, the MGFA Helpline, tools for finding MG specialists, emergency preparedness information, and opportunities to participate in research and clinical trials.
Ro Watkinson
The Physiographics Institute: A Shared Language for Lived Experience
Meet Ro Watkinson, founder of The Physiographics Institute and developer of Physiographics™, an emerging field exploring how physiology shapes what others may perceive as behavior. A rare-disease patient researcher with a background in nursing and healthcare, Ro developed Physiographics™ from lived experience, research, and years of observing the gaps between experience and perception.
At the exhibit, explore the “Four Directions Map”, an interactive tool highlighting four areas of function: Momentum, Recovery, Cognition, and Emotion. Add a colored chip representing what you’re drawing from most in that moment—and return throughout the day to see how your experience shifts.
The exhibit highlights an important message for the rare disease community: our functional resources are dynamic, and what we see on the outside may not tell the whole story.
Stop by, add your experience to the community map, and discover Physiographics™!
Founder
Meet The Tables!
Connect with fellow attendees through three interactive table discussions focused on topics that matter to the rare disease community:
Navigating the System — Share questions, resources, and strategies for navigating healthcare, services, and other complex systems.
Lived Experience & Advocacy — Connect through personal experiences and discuss how patients, families, and allies can turn their stories into meaningful advocacy.
Independent Living & Quality of Life — Explore resources, challenges, and ideas for supporting independence, accessibility, and quality of life.
Stop by a table, meet others in the community, ask questions, share what you’ve learned, and discover new resources and perspectives.
Empowering Independent Living & Community Advocacy
With 10 years of experience leading independent living programs, Heidi empowers individuals with disabilities through peer support, self-advocacy, skills training, and community integration.
As a table facilitator, Heidi will guide a collaborative conversation about the Independent Living Philosophy, strengthening community resources and advocacy, and helping individuals with disabilities remain independent and supported in their own communities.
Director of Programs at the Southeast Center for Independent Living
Heidi Collins
Thank you to our sponsors!
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Coffee & Support Group Table
Become a Sponsor!
Be part of the movement.
Connect with the Community
Exhibit and engage with patients, caregivers, medical professionals, and advocates.
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Gain valuable exposure and build meaningful relationships with a highly engaged audience.
Maximize Your Brand Visibility
Get featured in brochures, goody bags, and digital promotions before, during, and after the event!
For more information or sponsorship inquiries, contact Nicole White at Nicole@rarenewengland.org.
Your support helps makes these conferences possible.
See past events here
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November 2025
Empowering Rare Lives
Advocacy, Resilience, and Readiness for the Rare Journey
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June 2025
Empowering Rare Lives
Advocacy, Resilience, and Readiness for the Rare Journey
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2024
Rare Together
Uniting For Progress
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2023
Power of Community
What Sets Us Apart
People-First Approach
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Proven Process, Flexible Execution
We bring structure where it counts and adaptability where it matters. Our methods are clear, but always responsive.