Lupie Lunch with Lupus Friends and Family

11/03/2019

LUPUS FACT:
is not a contagious ....
Read more here....

LUPUS FACT:
is not a contagious and it is not related to cancer nor like . You cannot catch it through contact or by sharing forks, clothes or otherwise. If you are in a room with a lupus patient, you are safe from us but we may not be safe from you (and your germs, bacteria etc.) as we tend to have weak immune systems.

02/05/2018

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25/04/2018

New York - let's get together in Manhattan this Saturday.

Sat, Apr 28, 2018, 2:00 PM: Lupus friends and family getting together to discuss lupus, how it effects us, share experiences, and find love and support from someone who understands.

25/09/2017

Attend the meeting of the year online through webcast. The meeting will address lupus in a clinical study and have the FDA present. It is worth taking a listen, educate yourself on how the system works, and find out how you can make a difference. Anyone can sign up - also those outside New York or the United States. Sign up here. It is FREE!!

This meeting was put together by several lupus organizations in order to make a difference with the FDA and new drug development for lupus patients. By attending this meeting, you, too, may influence

25/09/2017

When Harvard Ph.D. student Jennifer Brea is struck down by a fever that leaves her bedridden, she sets out on a virtual journey to document her story as she fights a disease that medicine forgo. Jenni

16/07/2017

Please click on this link and endorse Charlotta for her outstanding efforts. Make it count!!!

Congratulations on your WEGO Health Awards nomination Charlotta Norgaard. Learn about this amazing Patient Leader at https://awards.wegohealth.com/nominees/12422

02/07/2017

Please read and share

The efforts of our CEO, Charlotta Norgaard, and the brave crew of advocates made a big impression at Capitol Hill earlier this week. The fruits of their labor paid off.

While there, we asked for $5 million Dept of Defence funding allocated specifically to lupus and it has hereby PASSED in the U.S. House of Representatives Appropriations Committee. This is excellent news for all of us lupies and the possibility of researchers finding a cure for our terrible disease. Please celebrate and share this great news.

Thank you to the lupus across the US who came together to be ensure the patient's voice was heard in Washington DC. Thanks to the representatives listening to us and giving us hope.

You can attend, too. Next big date is September 25, 2017. Are you joining us? Be part of the change. Make the patient's voice count.

26/06/2017

"The best thing for me is an informed patient" - Dr Evelyn Lewis&Clark

26/06/2017

Follow my lupus advocacy journey...

Our CEO Charlotte Nørgaard is at the US Capitol at the National Lupus Summit about to make a difference for all lupus patients. Follow her journey here.

08/06/2017

02/06/2017

Lupus Friends and Family Foundation are looking for patients who wish to make a difference in the name of research. Share your opinion on clinical trials with researchers. Some may pay for your help. See if you qualify here:
https://www.surveymonkey.com/r/568W7QK

22/05/2017

Want to become a patient advocate? Want to get involved? You can! Participate in our next live video webinar focusing on becoming a patient advocate. Free to attend. Sign up here and to get our event calendar: https://www.meetup.com/Lupus-Friends-and-Family/events/239000083/

DUE TO ILLNESS, THIS EVENT HAS BEEN POSTPONED.
Expect a new announcement next week. Apologies for the unexpected last minute change.

DUE TO ILLNESS, THIS EVENT HAS BEEN POSTPONED.
DUE TO ILLNESS, THIS EVENT HAS BEEN POSTPONED.
DUE TO ILLNESS, THIS EVENT HAS BEEN POSTPONED.

Want to become a patient advocate? Want to get involved? You can! Participate in our next live video webinar focusing on becoming a patient advocate. Free to attend. Sign up here and to get our event calendar: https://www.meetup.com/Lupus-Friends-and-Family/events/239000083/

01/05/2017

Happy 1st of May. We are officially in Lupus Awareness month.

03/11/2016

Want the chance to beat your disease? Sign up for free here

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02/11/2016

Here's to all across the globe.
Please take a read and watch this video. Yours truly in there talking about how lupus affected me and what we can do about it. It was a rough day, little sleep, etc. but the message is clear never the less. Please share with all you know (feel free to tag me) and help create awareness.

Should you want to try this out yourself, may I suggest that you find a partner to do it with and "give" each other a program to minimize the cost. ;)

PLEASE share with all friends, groups, and pages on all social media. Your help will help ALL LUPIES - and we all know we need this. Let's take back some control and live higher quality of life again.

Thanks family!!

We want to help lupus patients take control of their health through dietary intervention study.

15/10/2016

Time for our next support group meeting in

Please note this support group will be held at a different place than usual. Still at the NYU medical center but on the 4th floor. We are meeting in the waiting area of the 4th floor, in the back unde

15/10/2016

Let's meet up and walk as a team of lupus friends and family. More details to come shortly. Please sign up here and add your name to the "Lupus Friends And Family" team on http://walk.l

13/10/2016

Governor should sign bill to reform step therapy and put doctors back in control

03/10/2016

Omega 3 may be the symptom eraser we all have been looking for

Consuming an omega-3 fatty acid called DHA, or docosahexaenoic acid, can stop a known trigger of lupus and potentially other autoimmune disorders, researchers have discovered.

28/09/2016

Please join our next support group on October 3rd and our BIG friends and family gathering on November 7th in New York City. Free to sign up and attend. Please share!

23/09/2016

See all New York City patient events online. Sign up free of charge and RSVP when you wish to attend. Hope to see you soon.

We are a peer-to-peer support, resource and education group rooted in patients helping patients by sharing their stories and successes. We come together as a group to discuss the ways we have been suc

27/06/2016

Lupus Friends and Family Foundation Inc. are about to make history. You can be a vital part in ensuring it happens. If you live in the state of New York, please take action now and support those suffering from lupus. There is a better tomorrow around the corner, you can make it come true with just 5 minutes of your time. If ever I needed your help, it is now. PLEASE NEW YORKER, I NEED YOUR HELP NOW!!!

25/05/2016

Not just that but no one is taking into consideration the allergic reactions many of us have to foods, environments, and animals. How about the impact of sleep in a clinical trial? You are much more likely to have a flare if you don't get your rest but no one takes that into consideration during a clinical trial. It is time to change the way we measure things and make some real impact on lupus patients' lives.

Read about how a study of published clinical trials reveal that they dont adequately take the heterogeneity of lupus into account.