Community Events
RARE Health Equity Summit
This event is for rare disease patient advocate organizations, non-profit stakeholders, industry professionals, and others who are looking to collaborate with other experts about health inequities.
Rare New England Annual Conference
ARM Foundation for Cell and Gene Medicine will have a virtual exhibitor booth at this event, where attendees will have access to our educational materials about cell and gene medicine. The Rare New England Annual Conference is primarily for patients and families to learn more about the latest developments in treatments for rare and complex diseases.
Rare Diseases Orphan Products Breakthrough Summit
This event is for patient advocacy groups, government, industry, and academia to unlock new insights, network in a positive virtual environment, and discuss critical topics in the rare diseases and orphan products field.
Rare Diseases and Orphan Products Breakthrough Summit
This event is for patient advocacy groups, government, industry, and academia to unlock new insights, network in a positive virtual environment, and discuss critical topics in the rare diseases and orphan products field.
SCDAA Annual National Convention
Sickle Cell Disease Association of America, Inc. (SCDAA) will hold its 49th Annual National Convention virtually on October 12-16, 2021.
Cell and Gene Meeting on the Mesa
ARM Foundation for Cell and Gene Medicine is presenting a Spotlight Session on the topic "Information Patients Want about Regenerative Medicine.” The Meeting on the Mesa conference is primarily for industry professionals, with some participation from non-profits and advocacy groups. the ARM Foundation for Cell and Gene Medicine spotlight session is for those who seek greater comprehension of patient needs for understanding regenerative medicine, cell, and gene therapies.
Rare Patient Advocacy Summit
As of 8/20/2021, ARM Foundation for Cell and Gene Medicine learned that this event will be fully virtual. ARM Foundation for Cell and Gene Medicine will be present and Cynthia Kuan, Program Director, will be available for individual and group meetings. This event is for patient advocates, both individuals and organizations. Live streamed and limited in person participation.
The Disorder Channel: The Rare Disease Film Festival
This event, which is free for patients and caregivers, includes selections from The Disorder Channel featuring a curated lineup of short films addressing the day-to-day challenges and struggles of rare disease patients and their families. A panel discussion and virtual networking among the participants and attendees are highlights of the film festival. The films focus on two themes, Chasing Cures – Parents Fighting for Progress, Awareness and Advocacy and Siblings Supporting Siblings – Stories of Empathy and Understanding.
Advocating for Yourself or Your Child in a Clinical Trial
This 15- minute event is hosted by CISCRP, a nonprofit dedicated to educating the public and patients about the role that clinical research plays in public health. Try this new short-form presentation to keep up-to-date on subjects important to you.
Newborn Screening Bootcamp
For patient advocate organizations, individuals, health care providers, activists, and others who want to learn about newborn screening for rare disease and other conditions. This is especially important for people who want a condition to be added to a state screening panel.
World Orphan Drug Congress USA
Jennifer Briggs Braswell, PhD, Executive Director of ARM Foundation for Cell and Gene Medicine, will present "Educating the Public, Patients, and Families: how companies can more effectively communicate cell and gene therapies" in the afternoon of Thursday, August 26, 2021. She joins 1,200 rare disease professionals at the largest rare disease gathering globally.
BDSRA Virtual Annual Family Conference
BDSRA Virtual Annual Family Conference
July 23 - 25, 2021 | virtual
Hosted by Batten Disease Support and Research Association
Jennifer Briggs Braswell, PhD, Executive Director of Foundation for Cell & Gene Medicine, will host a panel about Understanding Clinical Trials. The panel explores clinical trials for Battens Disease and other CLN disorders with Erika Augustine, MD, Associate Chief Science Officer and Director of Clinical Trials at Kennedy Kreiger Institute, and Joe & Michelle O'Leary, parents of a boy who participated in a trial for the only approved drug for CLN2. They also discuss the special nature of Gene therapy trials for Battens and related genetic disorders.
The BDSRA’s signature event each year is the family conference. In 2019, over 450 family members, children, and researchers attended to learn about patient care, education, and the latest research. In 2020, due to the COVID-19 pandemic, They held the family conference virtually for the first time ever! Approximately 700 people from over 15 different countries attended sessions virtually. Each member of the family and industry experts were able to engage in a meaningful way from the comfort of their own home. This year, to ensure health and safety, the conference will be held virtually once again.
This event is for patients, families, and researchers who are looking to learn more about patient care, education, and the latest research.
Rare Disease Week
Rare Disease Week on Capitol Hill brings together rare disease community members from across the country to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators.
ARM Foundation for Cell and Gene Medicine hosts a virtual exhibition table, with printable education materials about how cell and gene medicine, a growing field, is a new paradigm for healing rare genetic diseases.
This event is for patients, caregivers, and those who want to advocate for rare disease patients and their families and influence legislators in the US.