436 results for “sharing”

Working with a condition: Your rights and options for sharing with your employer and taking leave

Posted July 28th, 2017 by

Have you ever struggled with managing your health condition(s) while holding down a job? Or worried about missing too much work because of your unpredictable symptoms?

Team of Advisors member Hetlena (TheLupusLiar) is living with lupus and is very interested in the topic of balancing work with a chronic health condition. She helped us develop these infographics, which apply to people with any medical condition.

Sharing about your diagnosis at work

Do you need to tell your employer? What can and can’t they ask you about your health? What role should your human resources department play? Find out in this infographic.

(If you want to go deeper into these topics, here’s a good resource with answers to more questions like this.)

Work leave rights, at a glance

This infographic helps explain work leave under the Family and Medical Leave Act (FMLA) and the American Disabilities Act (ADA) – and how they can cover you when going to work isn’t possible because of your condition.

If you’re looking for more than an intro to the FLMA and ADA, you can find the full details here.

On PatientsLikeMe

More than 51,000 members have listed “working with my condition” as an interest on their profile, and there are hundreds of discussions about work and jobs in the forums.

Have any experience with (or questions about) work leave or working with your condition? Comment here or join the community to take part in the conversation.

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Paul Wicks on the power of sharing data

Posted April 5th, 2017 by

Back in December, our VP of innovation, Paul Wicks, Ph.D., spoke at the annual International Symposium on ALS/MND in Dublin. The goal of the annual meeting is to share new understandings of ALS/MND as quickly as possible through collaboration between leading researchers around the world.

Now, we’re sharing a video of his presentation about what you and the ALS community has shared about living with ALS over the last 10 years.

Here’s what Paul had to say:

“We hope this presentation shows the power of patients sharing their data to help shed light on ALS. It’s a disease that can isolate people, rob them of their voice, and sap their strength to fight back, so we’re proud that we’ve been putting the data our members share to good use for over a decade now and we’re keen to share some highlights of what we’ve found.”

What do you think about Paul’s presentation? Share your thoughts in the forum.

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