Sporadic infantile bilateral striatal necrosis
Synonyms: ABSN | Acute bilateral striatal necrosis | Sporadic IBSN | Sporadic infantile striatonigral degeneration | Sporadic infantile striatonigral necrosis
Sporadic infantile bilateral necrosis is the sporadic form of infantile bilateral striatal necrosis (IBSN; see this term) a syndrome of bilateral symmetric spongy degeneration of the caudate nucleaus putamen and globus pallidus characterized by developmental regression choreoathetosis and dystonia progressing to spastic quadriparesis.
Newly diagnosed with
Sporadic infantile bilateral striatal necrosis?
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Moonshots for Unicorns
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Center for Chronic Illness
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TO INCLUDE, INFORM AND INSPIRE people around the globe through the joy of skating, reflecting the compassion, respect and innovation that make ours the world’s premier inclusive organisation. Inclusive Skating is dedicated to the advancement of public participation in sport and the promotion of equality and diversity. Our primary objective is the development and implementation of programming which fosters the inclusion of skaters with any form of impairment or disability. Our ethos of inclusion extends to skaters of all ages and backgrounds; we welcome all with open arms. Values of empathy, integrity and empowerment are central to the pursuit of these goals. We believe that everyone should have the opportunity to experience the community, camaraderie, self-fulfilment, achievement, challenge, and thrill that participation in skating sports offers. We work to create these opportunities by offering activities, educational resources, events, training, and championships for our community.
Rare Disease Ghana Initiative
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Patient Advocate Foundation
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Botswana Organisation for rare Diseases
advocate for Rare disease patients and their families
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Indo US Organization for Rare Diseases (IndoUSrare)
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Rare Disease Male Mental Health Support Group
To The purpose of the group is to help break the stigma around male mental health and to encourage to take care of their emotional well being . It provides rare disease patients, caregivers with a safe space to talk about their experiences, get support and listen to other peoples stories . Having a rare disease comes with many added layers which can impact your life such as physical, medical, emotional, relationships and bereavement so it is important to talk about your emotional and mental well-being. Through awareness and education men have come together in this format and despite different rare conditions have found there is more on common with other men through connecting and supporting each other in this way .
Undiagnosed Diseases Network Foundation (UDNF)
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MarylandRARE (research, advocate, resource & education) is a diverse coalition of rare disease community stakeholders in Maryland. Brought together by lived experience, this coalition of rare disease patients and caregivers, are working to bridge the gap regarding understanding, information, and resources that lead to systemic change at the local, state, and federal levels of government.
Uplifting Athletes Inc.
Inspire the Rare Disease Community with hope through the power of sport.
For a list of clinical trials in this disease area, please click here.