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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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Genetic Alliance

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

JohnNovack's journal

JohnNovack

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

200128

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

Genetic Alliance

'ROUND AND 'ROUND AND 'ROUND I WILL GO!!

Mandymuff's journal

Mandymuff

round-and-round-and-round-i-will-go

200128

I had an appointment with my primary care doc today, to get results of some things witch she ordered last week. The blood work came back all fine, (other than my Synthroid needs a bit of adjustment.) The x-rays showed no changes...........so, guess where I am now? Going around and 'round, and 'round in circles for the next few weeks......or longer, until someone decides what is going ... Read More

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Genetic Alliance

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

200128

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

Genetic Alliance

POSITIVELY SO !!!!

Mandymuff's journal

Mandymuff

positively-so

200128

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

Genetic Alliance

Cyclic Vomiting Syndrome

In: How my disease has changed my life

2002

cyclic-vomiting-syndrome-14

200128

I’m 16 years old and my mom is diagnosed with CVS. I started my period when I was 12 years old, and a couple months ago I started throwing up very badly on my period. For the past three or four months each period I’m throwing up, basically liquids and it gets yellow and green, I get sweaty and hot and I know I’m going to start throwing up. My mom said it will get worse as I grow up ... Read More

Genetic Alliance

Cyclic Vomiting Syndrome

In: How my disease has changed my life

2002

cyclic-vomiting-syndrome-13

200128

I’m 16 years old and my mom is diagnosed with CVS. I started my period when I was 12 years old, and a couple months ago I started throwing up very badly on my period. For the past three or four months each period I’m throwing up, basically liquids and it gets yellow and green, I get sweaty and hot and I know I’m going to start throwing up. My mom said it will get worse as I grow up ... Read More

Genetic Alliance

What "Helper" Items/Tools Do You Use?

Mandymuff's journal

Mandymuff

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

200128

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

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Genetic Alliance

Announcement: an update on tags

Brian's journal

Brian

announcement-an-update-on-tags

200128

Members, This afternoon, we will remove all tags from Inspire until we can better address the concerns you have raised, and give you more control over this feature. I am sorry that we launched this feature too quickly, without enough member feedback, and I thank all of you who took the time to voice your opinions and give us helpful feedback. With this in mind, there are a few things ... Read More

Genetic Alliance

Especially For The Young Crowd !

Mandymuff's journal

Mandymuff

especially-for-the-young-crowd

200128

I am seeing a lot of young people joining Inspire these days, and I am wondering if you feel you are in a site for "old people"? You are not! So, I am starting a thread for young people, and you are wondering why, considering that I personally am 77 years old now........HOWEVER.....I WAS, AT ONE TIME...YOUR AGE! And, I remember it well! What I remember most was feeling like I had no ... Read More

Genetic Alliance

Why asking for help is so hard

Chronic-Inspire's journal

Chronic-Inspire

why-asking-for-help-is-so-hard

200128

By Radha_Inspire Digital Editor, Inspire People ask each other for help all the time – at work, among friends, and at home from partners and family, for example. But when all parties are healthy, asking for help feels reciprocal – the asker may be indebted for a short time but eventually they will be ready and able to return the favor. In the context of illness, especially cancer or ... Read More

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