Rare Cancer Day is an annual awareness day devoted to shining a light on rare cancers and the issues people living with them face. Spearheaded by the NORD Rare Cancer Coalition®, which is composed of 25 rare cancer-specific member organizations.
You are invited to attend the 10th annual WORLDFair meeting, a dedicated event focused on lysosomal diseases, taking place on October 12, 2024, at the University of Minnesota Landscape Arboretum. This annual meeting, organized by the Advanced Therapies Department, brings together patients, families, healthcare providers, and industry experts to share knowledge, experiences, and the latest …
EMPOWER CHANGE Your Voice Matters in Building a Rare Disease Advisory Council Join the coalition of rare disease patients, experts, and advocates like you to push lawmakers to create a Rare Disease Advisory Council (RDAC) in Rhode Island. Meet other rare disease community members in your state. Discuss the unique needs and challenges that the …
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An event for members of existing Rare Disease Advisory Councils (RDAC). The 2nd Annual RDAC Member Meeting will be held in Washington, DC just before the NORD Rare Diseases & Orphan Products Breakthrough Summit. This event brings together members of Rare Disease Advisory Councils across the country to facilitate valuable discussions and provide members with …
This reception offers dedicated networking opportunities for patient organizations, academic research institutions, clinicians, regulators, and industry partners working in rare cancers. About the Rare Cancer Coalition: In 2017, NORD founded a special Rare Cancer Coalition (RCC) to form a close knit, multi-stakeholder community focused on raising awareness and providing education about rare cancers, as well …
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The NORD® Rare Diseases and Orphan Products Breakthrough Summit® convenes thought leaders from patient advocacy organizations, industry, academia, research and government to discuss the most timely and critical topics facing the rare disease community.
The Multicultural Health Equity Collective’s 2024 Health Equity in Action: Communities Forward Summit is approaching quickly. To that end, the Collective is inviting you to participate virtually in the Summit. The Summit is being hosted by the Collective—Morehouse School of Medicine, National Association of County and City Health Officials, National Caucus of Native American State …
Join the Foundation for Sarcoidosis Research @stopsarcoidosis on October 28 from 10am-3pm EST for an interactive Externally Led Patient-Focused Drug Development (EL-PFDD) Meeting on Sarcoidosis w/ the FDA. Register to ensure your voice is part of this impactful discussion! https://www.stopsarcoidosis.org/pfdd/
EMPOWER CHANGE Your Voice Matters in Building a Rare Disease Advisory Council Join the coalition of rare disease patients, experts, and advocates like you to push lawmakers to create a Rare Disease Advisory Council (RDAC) in Vermont. Meet other rare disease community members in your state. Discuss the unique needs and challenges that the rare …
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Rhode Island Rare Action Network (RAN) members are invited to join us in-person at the Rhode Island State Library on Friday, November 1 from 9am-12:30pm ET for an advocacy workshop! NORD staff will provide: Education on Rare Disease Advisory Councils; A workshop on how to advocate when meeting with legislators and staff; An overview of …
Join @MitoAction on Friday, November 1st for an Expert Series on PDCD with Dr. Jirair Bedoyan. In this month's Expert Series presentation, Dr. Bedoyan will present the essentials for understanding pyruvate dehydrogenase complex deficiency (PDCD) and detail current clinical trials and therapeutics research for this disorder at UPMC Children’s Hospital of Pittsburgh. Click the link to visit …
Sisters' Hope Foundation/Cure ALSP is excited to announce their 2024 Run N Roll 5k being held in-person in Lebanon, PA and virtually on November 2, 2024 to support ALSP, a rare brain disease which affects memory and movements. Register here: https://charity.pledgeit.org/ALSPRunNRollLebanonValley
The Cardiac Neurodevelopmental Program at Boston Children's Hospital is excited to announce the next Cardiac Neurodevelopmental Family Symposium. This event brings together families and professionals from the heart defect community for a day of learning, networking, and building connections. We hope to see you there! Click here to get tickets. Date: Saturday, November 2 Time: …
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Vermont Rare Action Network (RAN) members are invited to join us in-person at Miller Center Community Room on Saturday, November 2 from 10 a.m. - 2 p.m. ET for an advocacy workshop! NORD staff will provide: Education on Rare Disease Advisory Councils; A workshop on how to advocate when meeting with legislators and staff; An …
Connect Virtually with other Pemphigus and Pemphigoid Patients and Caregivers in South Florida on November 3rd. Living with pemphigus and pemphigoid is hard enough, when you feel alone it seems even harder. You are not alone. https://fundraise.pemphigus.org/group_sfl_nov2024
