Answer this short survey to help with our data mapping project #raredisease https://lnkd.in/eScjJfws
Rare New England
非盈利组织
Attleboro,MA 1,218 位关注者
Coordinating Resources for Patients and Families with Rare and Complex Disorders
关于我们
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.
- 网站
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https://www.rarenewengland.org
Rare New England的外部链接
- 所属行业
- 非盈利组织
- 规模
- 2-10 人
- 总部
- Attleboro,MA
- 类型
- 非营利机构
- 创立
- 2016
地点
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主要
120 North Main Street
Suite 202
US,MA,Attleboro,02703
Rare New England员工
动态
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Welcome Our New Rare Connections Support Group Coordinator & Moderator – Gaby Luna! We are thrilled to welcome Gaby as our Rare Connections Support Group Coordinator & Moderator! Gaby is a kind and compassionate advocate with a deep passion for supporting the rare disease and medically complex community. As a mother of two boys with special needs—one of whom has a rare disease—she has dedicated herself to elevating the patient voice and leading change. Since 2019, Gaby has been a patient advocate for a national infusion pharmacy, using her lived experience to support others navigating complex medical journeys. She serves as the MA Hub Leader for The Global Gastroschisis Foundation and has actively advocated at Rare Disease Week in D.C., DDNC, and the Caregivers in Crisis campaign in Massachusetts. Recognizing the need for a dedicated community for individuals on nutrition support, she founded the Central Line Travelers support group in 2022. With a Bachelor’s degree in Business Management, Gaby has also shared her expertise at Oley, ASPEN, and the Division of Children and Youth with Special Health Needs. Her passion, knowledge, and advocacy experience make her an incredible addition to the RNE team. Please join us in giving Gaby a warm welcome! We are so excited for her to continue her journey in supporting and empowering others through Rare Connections. ?? #rarenewengland #rne #supportgroup #peertopeersupport #raredisease #newengland #support #advocacy #education
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Interesting article highlighting the push for newborn screening for Fabry Disease #raredisease https://ow.ly/9SRz50Vf2b0
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Save these dates in your calendar for our annual conference series! We will be hosting an event on June 13th and on November 1st #raredisease
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Rare Disease Month has been a whirlwind of advocacy, collaboration, and inspiration! From the Boston Globe Rare Disease Summit to MassBio’s Rare Disease Day and the BioCT Rare Disease Forum, we’ve been honored to engage with passionate advocates, researchers, and policymakers. These events reinforced our mission—every day is Rare Disease Day at RNE, and we remain committed to education, support, and policy change for the rare disease community. Read our full reflections and learn how you can get involved: https://lnkd.in/enMweYEz #RareDisease #rarenewengland #rne #Advocacy #Community
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Save these dates in your calendar for our annual conference series! We will be hosting an event on June 13th and on November 1st #raredisease
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"Events for Rare Disease Day were supposed to happen this weekend in the nation’s capital. However, after federal layoffs and funding freezes within the FDA and National Institute of Health, it was postponed indefinitely." #raredisease https://lnkd.in/e3yTGRvN
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Save these dates in your calendar for our annual conference series! We will be hosting an event on June 13th and on November 1st #raredisease
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Answer this short survey to help with our data mapping project #raredisease https://lnkd.in/eScjJfws
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