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Genetic Alliance

Rare disease and genetic conditions support group and discussion community

Rare disease and genetic conditions support group and discussion community

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A support and discussion community connecting families with rare and genetic conditions. Share stories about caregiving, finding doctors, and more.


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To fight for opioid therapy, an Inspire member calls for action

Chronic-Inspire's journal

Chronic-Inspire

to-fight-for-opioid-therapy-an-inspire-member-calls-for-action

By Radha_Inspire Digital Editor, Inspire “I think it is time to organize ourselves into a lobbying group somehow.” Constance Small (acorns02459) wrote that on October 19th on Inspire as part of a conversation about what happens when it becomes difficult or impossible to get opioids to treat chronic pain. “I would be very happy to join anyone who would like to organize a campaign to ... Read More

Staying Active???

Mandymuff's journal

Mandymuff

staying-active-1

Staying Active???? Yes...I know...staying active is certainly a relevant term! To some it means running 3 miles a day. To others it means chewing their food with great vigor! But...whatever it means to you personally, WE DO ALL NEED TO BE ACTIVE! If we can't stay active physically, we still can stay active mentally. We cannot afford to vegetate. When our health becomes compromised ... Read More

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What "Helper" Items/Tools Do You Use?

Mandymuff's journal

Mandymuff

what-helper-items-tools-do-you-use

Many people start using "helper items" when in grade school.....all of a sudden the eyes need some help....you need glasses. Then, first thing you know, you end up loosing a tooth in the front, and you find you need a small plate or implant...something so you don't look like a toothless wonder. Then about high school you break a leg, and have to use crutches for awhile. Maybe you break ... Read More

POSITIVELY SO !!!!

Mandymuff's journal

Mandymuff

positively-so

When we are unwell it is sometimes very difficult to find the "good things" in our day, so, we stay focused on the pain, the inability, and the things which constantly bring us down. Finding "the positive" in any given day takes a lot of thought, incite, and just plain guts. However, that is what I am proposing for us, in this thread. Will it be easy every day? Certainly not! However ... Read More

What Is The Worst Thing We Do To Self?

Mandymuff's journal

Mandymuff

what-is-the-worst-thing-we-do-to-self

I warn you before I start....this is me coming from a place of conflict! I have been e-mailing for several years, with a lady I met on a chat board, several years ago. She was never a warm bubbly person, but needy, and we did have things in common, and I continued the friendship until this time, but I think I see the finish line. Let me explode, and tell you why I think there is one ... Read More

Anxiety and Aging

Mandymuff's journal

Mandymuff

anxiety-and-aging

First off........who is "aging"? Is it the people over 50? People over 70? It is neither of those....WE ARE ALL AGING! It has been a long time since I have met a person who is younger than they were yesterday! Oh yes.....some folks can be made to LOOK YOUNGER, but that has nothing to do with this topic. Somewhere around 60 years,(give or take a decade) we start to worry about aging ... Read More

A new collaboration, "Patient Perspectives," to amplify patients' voices

JohnNovack's journal

JohnNovack

a-new-collaboration-patient-perspectives-to-amplify-patients-voices

From: John Novack, Inspire Dear members, We're excited to let you know that we just began a partnership, "Patient Perspectives," with the industry magazine Life Science Leader. A goal of the collaboration is help life science executives understand better the journeys of patients and caregivers facing significant illnesses. We invite you to read and share the new guest column, "Making ... Read More

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Following up with the One Year Out after my TURBT

Terri32460's journal

Terri32460

following-up-with-the-one-year-out-after-my-turbt

Gone through with the TURBT last year (Feb.) and have passed the One Year Mark (of every 3 month recheck) and now beginning the 2cd year of still having the every 3 months rechecks--yes, so stressful as the appointment gets closer)....Happy Dance for the 1 year Bladder Cancer Free... Do have a strange question when I had the TURBT last year about a month after wards I began getting ... Read More

New column: "Grieving the Loss of Your Physician"

JohnNovack's journal

JohnNovack

new-column-grieving-the-loss-of-your-physician

From: John Novack, Inspire Dear members, I'm writing to share with you the latest in a series of “Experts by Experience” columns, as part of a collaboration between Inspire and Mayo Clinic. We invite you to read and share "Grieving the Loss of Your Physician," by Kari Ulrich. Ms. Ulrich, who lives with multiple disorders, including fibromuscular dysplasia (FMD) and Ehlers-Danlos Syndrome ... Read More

Gene testing, precision medicine, and shared information

Brian's journal

Brian

gene-testing-precision-medicine-and-shared-information

Dear members, How should we be thinking about our genetic information when it comes to disease? It’s a question many of us are asking here on Inspire, sometimes very intensely, depending on the nature of the disease. The information we get from our genome can have a direct impact on so much, including how, or if, we can be treated for certain types of disease -- that is the nature ... Read More

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