The Universal Declaration of Human Rights (UDHR) is a document adopted by the United Nations General Assembly on December 10, 1948. It was created in the aftermath of World War II to ensure that the atrocities and violations of human dignity witnessed during the war would never happen again. The declaration serves as a global standard for fundamental rights and freedoms that should be protected for every individual, regardless of race, nationality, religion, gender, or status. It includes 30 articles covering a wide range of civil, political, economic, social, and cultural rights, such as the right to life, liberty, education, work, and freedom from discrimination or torture.
December marks Universal Human Rights Month, a time to reflect on the rights that unite us. For individuals with chronic and rare conditions like myasthenia gravis (MG), universal human rights play a critical role in shaping access to healthcare, social inclusion, and quality of life. As you are advocating for yourself, it is important to know your key human rights and how they directly impact the MG community, alongside actionable resources to support these rights. Below are articles of the UDHR that are directly connected to a medical diagnosis, like myasthenia gravis.
Right to Health (UDHR Article 25)
The right to health ensures that everyone has access to adequate medical care and treatments. For individuals with MG, this means access to:
Essential medications like pyridostigmine, prednisone, and IVIg.
Specialized care from neuromuscular experts.
Support for treatment affordability.
Resources:
Global Genes provides tools for navigating rare disease care, including financial and insurance resources.
National Organization for Rare Disorders (NORD) offers patient assistance programs and advocacy support.
Medicine Assistance Tool helps find free or low-cost prescription programs.
Freedom from Discrimination (UDHR Article 7)
Individuals with MG may face discrimination in the workplace, education, or public life due to symptoms like fatigue, muscle weakness, or physical limitations. Protecting the right to equality ensures accommodations and equal opportunities for all.
Resources:
Job Accommodation Network -The Americans with Disabilities Act (ADA) mandates workplace accommodations, such as flexible schedules or modified duties.
Disability Rights Education & Defense Fund (DREDF) provides legal advocacy for disability-related discrimination.
Right to Work and Adequate Living Standards (UDHR Articles 23 & 25)
Managing a rare disease like MG often involves financial strain due to medical expenses and, at times, reduced ability to work. Upholding these rights ensures access to social support systems like disability benefits and fair workplace policies.
Resources:
The Social Security Administration (SSA) offers disability benefits for individuals with MG who cannot work.
Help Hope Live assists with fundraising for uncovered medical expenses.
National Disability Institute provides financial education and resources for those with disabilities.
The Assistance Fund provides financial support to individuals for out-of-pocket costs related to treatments.
National Organization for Rare Disorders (NORD) connects individuals with co-pay assistance programs and other financial support. Visit NORD’s Assistance Programs.
The Pan Foundation offers financial support for individuals underinsured for their treatment needs.
Needy Meds helps locate affordable medication options.
GoodRx provides coupons and discounts to make prescriptions more affordable.
Right to Education (UDHR Article 26)
For students with MG, equitable education includes accommodations such as extended test times, reduced physical activity requirements, or remote learning options during flare-ups.
Resources:
Center for Parent Information & Resources connects families with special education support programs.
Office for Civil Rights (OCR) ensures compliance with laws like Section 504 and the Individuals with Disabilities Education Act (IDEA).
Right to Participate in Cultural and Public Life (UDHR Article 27)
Living with MG shouldn’t hinder individuals from engaging in their communities. Accessible public spaces and accommodations ensure everyone can participate fully in cultural, social, and political activities.
Resources:
The EveryLife Foundation for Rare Diseases empowers individuals to advocate for legislative changes that promote inclusion.
Lotsa Helping Hands connects individuals with community support networks.
Right to Scientific Progress and Benefits (UDHR Article 27)
Research is a cornerstone for better treatments and a potential cure for MG. This right ensures that individuals benefit from advancements in science and have access to clinical trials and innovative therapies.
Resources:
ClinicalTrials.gov lists ongoing clinical trials for MG.
Genetic Alliance connects individuals with research opportunities and education about scientific advancements.
Right to Mental Health and Freedom from Degrading Treatment (UDHR Articles 5 & 25)
The emotional toll of living with MG—including stigma, frustration, and isolation—makes mental health support crucial. Additionally, individuals must receive compassionate, respectful care in all healthcare settings.
Resources:
The National Alliance on Mental Illness (NAMI) offers mental health support for chronic illness patients.
Crisis Text Line (text 741741) provides free, 24/7 mental health assistance.
Global Genes curates mental health resources specifically for rare disease patients.
Universal human rights form a framework to ensure dignity, access, and equity for all—particularly for those living with conditions like myasthenia gravis. By championing these rights and leveraging the available resources, we can build a more inclusive and supportive world. This Universal Human Rights Month, let’s work together to uphold these principles and support those navigating life with MG.
For more information or assistance, visit the Myasthenia Gravis Association or connect with advocacy groups listed above.
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