Lance Legislation Designed to Help Patients with Chronic Diseases and Disabilities

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Lawmaker joins noted rare disease advocates in effort WASHINGTON, D.C.– Congressman Leonard Lance (NJ 07) today announced he has reintroduced legislation that seeks to promote the development of meaningful treatments for patients with chronic and rare diseases. The bipartisan “Modernizing Our Drug and Diagnostics Evaluation and Regulatory Network […]

Patient Tools: The Health, Rare Disease and Chronic Illness Sub-Reddits of Reddit

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Sometimes “you can feel more like a citizen of the internet, than one of your own country.” At least, this is true when you use sites like Reddit. At Global Genes, we really enjoy the spirit of this global online community and feel it can […]

Emotional Health and Dealing with a Chronic Illness

If common diseases are horses, then rare diseases are zebras.

Written by Alyssa Rosengard There are many acute emotions that surround mental health issues and chronic illness. A few that I and my fellow “zeebs” seem to meet are shame and lack of acceptance: ashamed that our bodies are not functioning “normally” and pushing until exhaustion, […]

Lady Gaga – ‘Born This Way’ Foundation (BTWF) Launches To Promote Acceptance

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“Whether life’s disabilities left you outcast, bullied or teased.  Rejoice and love yourself today ’cause baby, you were born this way.” – Lady Gaga How many of us have experienced a time when either ourselves or our children have been mocked or teased because of […]

Social Security, Medicare and Obama-care: The Real Story

When my daughter announced that she’d received a small scholarship for the college of her choice, and that I’d pay for the remainder, I had two simultaneous thoughts: I can’t afford it, and it has to be done. Decades ago, When America began providing guaranteed […]