At Rare New England (RNE), we believe in the power of bringing people together to raise awareness, share knowledge, and strengthen the rare disease community. Over the years, we've hosted conferences, educational workshops, advocacy initiatives, and community gatherings that connect patients, families, researchers, healthcare professionals, and advocates.
Explore the pages below to look back at our past events, celebrate the connections we've made, and see how we're working together to advance rare disease awareness, education, and advocacy.
Annual Conferences
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Rare Disease Day Speaker Series
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Genetic Career Pathways Forum
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Community Fun
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And More!
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Annual Conferences ✳︎ Rare Disease Day Speaker Series ✳︎ Genetic Career Pathways Forum ✳︎ Community Fun ✳︎ And More! ✳︎
Past Annual Conferences
October 2026
“Advancing Rare Together”
November 2025
“Empowering Rare Lives”
June 2025
“Empowering Rare Lives”
2024
“Rare Together: Uniting for Progress”
2023
“Power of Community”
Community Events
At Rare New England (RNE), we believe that supporting the rare disease community goes beyond education and advocacy—it's also about fostering connections, creating memories, and celebrating what makes each of us unique. From fun-filled outings at the local zoo and hosting the Festival of Genomics in Boston to comedy shows and supporting legislative efforts that impact rare disease families, our programming is as diverse as the community we serve.
Through this holistic approach to supporting and celebrating Rare, we strive to create opportunities for connection, empowerment, education, and joy.
Explore our past events below to discover the many ways RNE brings the rare disease community together!
Past Community Events
Roar For Rare
On August 4, 2024, Rare New England partnered with Capron Park Zoo in Attleboro, MA, to host Roar for Rare, a fun-filled community event dedicated to raising rare disease awareness, bringing local rare disease families together, and fostering connections through a day of wildlife, activities, and celebration!Comedy Night
On June 17, 2023, Rare New England hosted **Comedy Night**, a laughter-filled fundraiser that brought the community together while raising funds to support RNE's mission of connecting rare disease patients, families, and healthcare providers through education, awareness, and community support.
Healthcare Legislation Efforts
Since 2015, **Rare New England has supported legislative efforts to improve healthcare policies for rare disease families**, including partnering with legislators and the National Organization for Rare Disorders (NORD) to advocate for the establishment of the Massachusetts Rare Disease Advisory Council, which was signed into law in 2021, ensuring the rare disease community has a voice in shaping healthcare policy.Wine for a Cause
In June 2018, **City Spirits partnered with Rare New England for its "Wine for a Cause" fundraiser**, generously donating 100% of profits from FitVine wine sales to support RNE's mission, including patient and family conferences, Rare Disease Day celebrations, teen programs, and other initiatives benefiting the rare disease community.MisGivings “FunRaiser”
On January 20, 2018, **Rare New England hosted its first-ever fundraiser, "MisGivings,"** featuring dinner, a silent auction, and a comedy performance by renowned radio personality and comedian Dave Kane. The evening brought supporters together for laughter and community while raising funds to support individuals and families affected by rare diseases.**Rare New England partnered with the Festival of Genomics** to host a dedicated stage for rare disease patients and families, featuring presentations and discussions on genetic testing, genetic counseling, patient-centered clinical trials, and the lived experiences of rare disease advocates. The event brought together researchers, healthcare professionals, patients, and families to promote education, collaboration, and a stronger voice for the rare disease community.
Festival of Genomics
Local Introductory Meeting
In May 2019, **Rare New England hosted a Local Introductory Meeting** to connect with community leaders, healthcare professionals, industry representatives, and policymakers to raise awareness of rare diseases and RNE's mission. Featuring speakers including Congressman Joseph Kennedy III, state legislators, medical experts, and patient advocates, the event highlighted the challenges facing rare disease families and the importance of collaboration, education, and advocacy in improving access to care and support.