1 (edited by PCL1029 Sun, 21 Apr 2013 09:53:26)

Topic: Introducing The New patient Network Website by FDA on 4-23,2013

Hi, everyone,
I attended  a FDA webinar for the patient-focused group rep. on 4/19,2013;
We were told to encourage all the patient advocates and their members to visit the  new " FDA Patient Network Website" to learn more about FDA;who they are and what they are working on the forefront of medical devices , new drug development and  current available clinical trials for patients.
At this early development, the FDA Patient Network Website is a one way street for information only  and patients cannot log in to ask questions.
However, on  May 21st, there will be a chance to log in and chat with the FDA;more or less like a town hall meeting or  a Q&A session.

The benefits:
-patient can read the biweekly newsletter published by FDA at the website.
-patient can listen and learn from the  recorded webinars of the issues at hand(ie: drug development,how to become involved as a FDA representative)
-patient can comment about FDA issues on the website as well as other issues.
-patient can learn about  the 4 stages of clinical trials development .
-patient can learn about the new approval of new drugs and medical devices.
-patient can find out the other options of treatments like"off label use" and "expanded access "for those exhausted treatment plans.
-patient can learn more thru FDA seminars that will be presented in the late summer and fall about medical devices , new drug development and clinical trials specially designed for patients and their advocates.
-patient can get info on drugs that NOT yet approved.

The slogan for this new FDA patient Network Website is:
Get involved,Get informed,Help FDA,Help Patients have a bigger voices.

The website address will be: PatientNetwork@fda.hhs.gov  and it will be announced by the FDA commissioner on  the morning of April 22,2013.

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Introducing The New patient Network Website by FDA on 4-23,2013

For those of us actively involved in FDA activities, this development finally has come to fruition.  The quest of soliciting patient input has been in the making for quite some time now and hopefully encourages active involvement with the patient community.   
Thanks for posting this update.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Introducing The New patient Network Website by FDA on 4-23,2013

Great news! Thanks for this and for all of the work that you have done on this Percy, Marion and everyone else, it is very much appreciated indeed by us all!

Hopefully much good will come from all of this and I look forward to reading all about it!

"Get involved, get informed" I like that!

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Introducing The New patient Network Website by FDA on 4-23,2013

Hi, Gavin,
Thanks for your compliment and be sure to say hi to your mum for me. how is she doing now? Back home now?
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Introducing The New patient Network Website by FDA on 4-23,2013

Percy and Marion,
Thank you for all your hard word to make this come to happen.
Lisa

This Information Is Not Intended Nor Implied To Be A Substitute For Professional Medical Advice. You Should Always Seek The Advice Of Your Physician Or Other Qualified Health Care Provider

Re: Introducing The New patient Network Website by FDA on 4-23,2013

Hi Percy,

Nope, mum is still in the hospital. They were aiming to get her home end of last week and would have but I put up a fight as she had a bad day Thurs. Then they said Friday but her BP dropped a lot so they kept her in over the weekend and said Monday. But she has had a spike in temp Sat and Sun night and her BP is still very low and they couldn't get it up so Monday was a no no. As of yesterday, BP still low so they are no aiming for Thursday this week. Cardiologist says that low BP is something that mum will have to live with now so I guess it is a case of getting the meds sorted to deal with that. Walking is a total nightmare for mum so what do they do...... put her in a bed in a bay that couldn't be further from the toilet if they tried! Complianed about that and they said they will try and move her if they can but the ward is full of elderly patients that get confused etc so the nurses want these patients nearer them so they can be monitored.

We'll see what Thurs brings but if that BP can't be sorted then my foot will be coming down, again! Getting very good at arguing with doctors I am! Just so everyone else knows what I am talking about, mum had another heart attack 10 days ago and has been in hosp since. 3rd heart attack now, grrrrr!

Stay strong!

Gavin

PS - Her arm still looks as if it was caught in a car door, never seen a bruise like that before, from fingernails to her elbow all around, totally purple! And a huge lump from a burst vein as well.

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

7 (edited by marions Tue, 23 Apr 2013 11:45:06)

Re: Introducing The New patient Network Website by FDA on 4-23,2013

This is the announcement made by Commissioner Hamburg:
http://blogs.fda.gov/fdavoice/index.php … ger-voice/
Additionally, we will be receiving pre-drafted materials, which will aid patients and advocates in voicing their opinions. 
The above will be added to our site, as soon as made available to us.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Introducing The New patient Network Website by FDA on 4-23,2013

Hey Sonny boy, that's you Gavin. Suggestion, a commode by her bedside?

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Introducing The New patient Network Website by FDA on 4-23,2013

Hi, everyone,

Here is--- the announcement.

FDA Voice Blog: http://blogs.fda.gov/fdavoice/index.php … ger-voice/

FDA Consumer Update: http://www.fda.gov/ForConsumers/Consume … 348661.htm

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Introducing The New patient Network Website by FDA on 4-23,2013

Thanks for these links Percy, will have a read of them later.

Lainy, mum is getting a commode at her bed at night now and is getting a wheelchair to help her to the toilet during the day, more staff on during the day. The physio has her walking a bit to the loo and follows with the chair so she walks half and gets pushed half. Says that she needs to try and walk to built strength up. Looks like she is developing an infection as well, green/brown phlegm coming up now and they took blood cultures today. BP still low and she is losing weight, about a pound a day since she has been in, down to 34.8kg now.

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.