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
Mentor & Author
National PKU Alliance (NPKUA)
Dr. Jennifer J. Brown
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.
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.
Melody Joy Paine
Founder & Director
Imperfect JOY® / Rare Rebels™
Julieta Bonvin Sallago, MD, MS, CCRP
Lead Clinical Research Associate
Assistant Professor
University of Connecticut Glycogen Storage Disease Program & Disorders of Hypoglycemia
Connecticut Children’s
Krista Brack
RI EDS Support Group Leader
Rare Disease Advocate
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.
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.
Special Needs Law Group of Massachusetts, PC.
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
Vanessa Junkins, RN, MBA
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
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
VP & Fundraising Chair
Director of Community Relations
Pamela Bove, MPH(c)
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.
Thank you to our sponsors!
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Become a Sponsor!
Be part of the movement.
Connect with the Community
Exhibit and engage with patients, caregivers, medical professionals, and advocates.
Expand Your Reach
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
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