Who We Are
We are Rare New England, a nonprofit organization serving the rare disease community.
Mission Statement
Our mission is to bring together New England patients, families and providers touched by rare and complex disorders. We offer educational opportunities, create awareness of available resources, and build foundations for support to improve patient quality of life and support the professional needs of healthcare providers.
What We Offer
Offering patient and family support
Highlighting our region's medical and community resources
Connecting patients to appropriate national support and advocacy groups
Creating educational opportunities for New England patients and providers to advance care and quality of life for rare disorder patients and their families
Increasing awareness that patients with rare and complex disorders live, work, attend school, and participate in communities across New England
Providing education about issues affecting rare and complex patients and their families to the medical community, the education system, regional legislators, workplaces, and others
Addressing topics such as complex care coordination, ADA and IEP accommodations, medical insurance problems, and more
Our People
RNE Staff - Board of Directors - Medical Scientific Advisory Board
The people who make up Rare New England have all worked in service to the rare and complex community and have proved commitment and eagerness for assisting patients and families through their medical odysseys.
RNE Staff
The RNE staff works hard to make our day-to-day operations go smoothly, whether it be communication and outreach through our social media channels or assisting in setting up our major programs. Our conferences, talks, and meetings happen because these individuals help make them so.
Nicole White
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Nicole White is a certified Community Health Worker who has over six years’ experience working in nonprofit management within organizations that support those living with rare and complex health conditions. She also has over eleven years’ experience in medical administration and management, while working at a local level one trauma center in Rhode Island. Most recently, Nicole was the Director of Program Services at A Wish Come True, also in RI, where she advocated for more family and patient involvement and assisted in expanding their mission to now providing much needed wellness and hardship programs for those whom they serve. With this work along with her previous advocating experiences, Nicole was nominated and awarded as a recipient of Providence Business News “Forty Under 40” Program in 2021.
Contact: nicole@rarenewengland.org
Elise Layne
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Elise Layne began working with Rare New England in 2023 as the support group moderator for the Rare Connections patient group. She has enjoyed the opportunity to continue in this role and also runs the RNE pediatric movie nights. Elise is currently a master's student in the University of Minnesota's Genetic Counseling Program and is looking forward to graduating this upcoming year. Previously, Elise worked as a research assistant at Boston Children's Hospital where she founded the hospital's first National Organization for Rare Disorders chapter. She also volunteered at Dana-Farber Cancer Institute working with those going through chemotherapy. In her free time, Elise loves to play tennis, try new recipes, and explore the city around her.
Ashley Kennes
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Ashley Kennes is a New England native and began working as the Development Consultant for RNE in February 2019, since then she has moved over to the role of Social Media Coordinator. She is a certified Genetic Counselor at Maine Medical Center and enjoys seeing patients in the cancer risk and prevention clinic. In the past, she has volunteered her time to other non-profit organizations by planning and participating in the Relay for Life for the American Cancer Society and Dance Marathon for the Children's Miracle Network. When not working, Ashley likes to play volleyball, read, and spend time with friends and family.
Gaby Luna
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Gaby Luna is a kind, compassionate human. She is a mother of two boys with special needs with her oldest having a rare disease and medical complexities. Gaby became her son's best advocate the moment he was born in 2016 and used her experience as a caregiver to become a patient advocate in 2019 for a national infusion pharmacy. She is passionate about elevating the patient voice & leading change. Gaby is also the MA Hub Leader for The Global Gastroschisis Foundation. She's advocated at Rare Disease Week DC, DDNC, and is a member of the caregivers in crisis campaign in Massachusetts.
Gaby through her passion in supporting patients on nutrition support, in 2022 created and runs the Central Line Travelers support group on facebook.
Gaby also has a Bachelor's degree in Business Management and has presented at Oley, ASPEN & for the Division of Children and Youth with Special Health Needs.
She is so excited to be part of Rare New England & continue her journey in supporting others.
Contact: gaby@rarenewengland.org
Board of Directors
Our Board of Directors, including founder and CEO Julie Gortze, dedicate their time to making key decisions about RNE's goals, direction, and future, so that we may best continue to serve the rare disease community and all those touched by rare disease.
Julie Gortze, RN
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Julie Gortze is a registered nurse who has worked as an RN in pediatric home care, subacute care, and acute care. Julie has personal experience with a complex disease and has learned first-hand what patients and families must deal with while searching for a cause for symptoms and then receiving a diagnosis that has no cure.
Contact: julie@rarenewengland.org
Tasia Rechisky
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Tasia Rechisky was diagnosed as an infant with a rare metabolic disorder, Very Long Chain Acyl Coa Dehydrogenase Deficiency (VLCADD). She has spent the last ten years as a patient advocate.
Contact: tasia@rarenewengland.org
Lois Foster
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Lois, LICSW, is a clinician in private practice in Attleboro, Ma. She received her MSW degree from Boston University.
Contact: lois@rarenewengland.org
Ruth Segall
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Ruth Segall is an Associate at Windham Capital Partners, a leading healthcare technology & life sciences investment firm, where she is responsible for sourcing, due diligence, and supporting portfolio companies after investment.
Contact: ruth@rarenewengland.org
Haley Director, MPH
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Haley Director is a PhD student at the University of Pittsburgh School of Public Health in Health Services Research and Policy.
Contact: haley@rarenewengland.org
Medical Scientific Advisory Board
The Medical Scientific Advisory Board is comprised of doctors, researchers, and counselors who contribute their expertise in the rare disease field toward making sure our content is accurate and up-to-date. We want the best information to reach those in our community and the MSAB makes sure that happens!
Lisa Louise Brailey, MD, DABMGG
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Dr. Brailey obtained her undergraduate degree in biology from Harvard University and her medical degree from the University of Connecticut. She completed residency and fellowship training in genetics at Yale University and is board-certified in clinical genetics, cytogenetics, and molecular genetics. She is currently an assistant professor and associate director of tumor cytogenomics at Mount Sinai Medical Center in New York City, and serves on the board of directors of the New England Regional Genetics Group.
David Weinstein, MD
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Following his graduation from Trinity College (CT) and Harvard Medical School, Dr. Weinstein did a residency, chief residency, and fellowship in pediatric endocrinology at Boston Children's Hospital. He subsequently obtained a Masters in Clinical Investigation from Harvard and MIT, and became Director of the Glycogen Storage Disease Program at Boston Children's. In 2005, Dr. Weinstein moved to the University of Florida where he directed the Glycogen Storage Disease Program and became a tenured professor. He and his team moved to the University of Connecticut and Connecticut Children's Medical Center in 2017 to perform gene therapy for GSD. In 2020, he left the academic world to serve as Vice President of Clinical Development and the medical lead for the GM1 gangliosidosis gene therapy trial at Passage Bio. At the time of his departure from clinical care, Dr. Weinstein was following over 700 glycogen storage disease patients from 49 states and 52 countries.
Amy Kritzer, MD
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Dr. Amy Kritzer is an attending in the Division of Genetics and Genomics at Boston Children’s Hospital. She graduated from the Albert Einstein College of Medicine in Bronx, NY. She did her Pediatrics residency at The Floating Hospital for Children at Tufts Medical Center in Boston, MA and then completed fellowships in Clinical Genetics and Medical Biochemical Genetics at Boston Children’s Hospital.
Kathleen Swensen, MPH, MS
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Kathleen Swenson is the current Program Director for the Master's Program in Genetic Counseling at Boston University School of Medicine. She is a graduate of Sarah Lawrence College and holds a Master of Public Health from Columbia University. Throughout Kathleen's career, she has provided clinical care across multiple specialties, advocacy work at the national level and local levels, and held positions in industry as a Medical Affairs Genetic Counselor.
Annual Financial Reports
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2025
ANNUAL REPORT
990 EZ -
2024
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2023
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2022
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2021