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Showing articles from Advocacy tag

Understanding Career Opportunities and Employment Benefits

Being able to work means so much more than the money we earn. Having a career can give our lives a sense of purposeful accomplishment while providing countless opportunities to learn, grow, and develop fulfilling relationships. The employment benefits you receive, in addition to your salary, can also provide you and y…

Caring for Yourself and Your Children

Living with a rare disease is like running uphill over one hurdle after another. Fatigue and pain come with the territory. On top of that, there’s the extraordinary effort needed to manage your health, pay your bills, hold down a job, and face the problems and hassles of modern![][1] life. These energy-sapping challe…

Family Planning and Financial Considerations

Choosing to start or expand a family is one of the most significant decisions couples will make in their lives. It is a highly personal one th![][1]at may be influenced by a person’s religion, societal norms, a biological urge to have a child, or even a desire to fill your home and world with more children. The decis…

Susannah Cahalan - 2019 RARE Patient Advocacy Summit Keynote

With exquisite detail and raw honesty, Susannah Cahalan reveals her personal journey from a promising young writer with a clean bill of health to a restrained hospital patient descending into madness. Employing her award- winning journalistic skill, Cahalan uncovers valuable insight into the human brain and incites im…

RARE Webinar: Thyroid Eye Disease Awareness and Education

Learn valuable information about thyroid eye disease and treatment options in this webinar. Designed for patients and their families, the panel of experts will empower you with knowledge and help you create a community of support and hope. [Download Slides][1] [1]: https://globalgenes.org/wp-content/uploads/2019/…

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