Navigation Links
Immune Deficiency Foundation Among the First Rare Disease Patient Organizations to Launch Major Social Networking Initiatives
Date:10/6/2009

TOWSON, Md., Oct. 6 /PRNewswire/ -- People with primary immunodeficiency diseases (PIDD) and their families will now be able to connect with one another and share their experiences through a new multidimensional social networking initiative, the Immune Deficiency Foundation (IDF) announced today. Primary immunodeficiency diseases are a group of rare, chronic illnesses, caused by hereditary or genetic defects in the immune system. In the U.S., approximately 250,000 people are diagnosed with PIDD, with thousands more undetected. By reaching out to this community, IDF is one of the first rare disease patient groups to make full use of social media tools and technologies.

"We are creating a living, breathing online community, where patients and families can share their experiences, hopes and challenges of living with PIDD," said IDF founder and president Marcia Boyle. "It is easy to feel lost among the millions who use popular social media sites like Facebook - especially if you are someone with a rare disease. Now, our patients and families have a trusted social networking community they can call their own and find others who share their particular primary immunodeficiency disorder or life circumstance."

IDF's social network includes:

As IDF's social media communities continue to evolve in sophistication and content, patients and families will increasingly be able to benefit from both the collective intelligence and one-to-one communications that such sites make possible. "We are redefining what it means to be a truly engaged and empowered patient community," Marcia Boyle added.

About The Immune Deficiency Foundation

The Immune Deficiency Foundation, founded in 1980, is the national non-profit patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education and research. People diagnosed with PIDD often find it difficult to receive specialized health care, proper diagnosis and treatment. They experience difficulties financing health care, finding educational materials and locating others to share their experiences. IDF helps individuals overcome these difficulties and live healthy and productive lives.

To learn more about IDF's social media initiative, visit www.primaryimmune.org

SOURCE Immune Deficiency Foundation


'/>"/>
SOURCE Immune Deficiency Foundation
Copyright©2009 PR Newswire.
All rights reserved

Related medicine news :

1. Strengthening Immune System in Time for Cold and Flu Season
2. Using Your Immune System to Fight Cancer
3. Autoimmune Disorder Linked to Stroke, Heart Attack in Women
4. Bodys immune system response to dental plaque varies by gender and race
5. Study looks at using the immune system to reduce prostate cancer risk
6. Neuropathy Association Research Grants Advance the Understanding of Diabetic Neuropathy and Autoimmune Neuropathies
7. Immune Cells Offer Hope for Injured Lungs
8. MedImmune Receives U.S. Government Order for Additional 29 Million Doses of Nasal Spray Vaccine for 2009 H1N1 Influenza
9. Swine Flu Shots Safe for People With Weak Immune Systems: Experts
10. Chiropractic Helps Strengthen Immune System and Prevent Sickness
11. Reportlinker Adds Autoimmune Disease Therapeutics Report
Post Your Comments:
*Name:
*Comment:
*Email:
(Date:12/2/2016)... (PRWEB) , ... December 02, 2016 , ... On Dec. ... the Hard Rock Hotel San Diego honoring the 2016 MPN Heroes—eight individuals who have ... (MPNs) by going above and beyond the standard of care, demonstrating leadership within the ...
(Date:12/2/2016)... ... December 02, 2016 , ... ... the launch of its 60-day free trial program for all of the company’s ... the offer a truly hassle free experience. , FlexiSpot’s unique desktop risers use ...
(Date:12/2/2016)... ... December 02, 2016 , ... With the number of ... of an injury, patients must find the one that works for them. When an ... created a machine that worked and decided to share it with others. , He ...
(Date:12/2/2016)... ... 02, 2016 , ... Mediaplanet is proud to announce the ... the innovative treatments, therapeutic technologies, and revolutionized nutrition that are helping patients and ... 6 years in the last 3 decades,” says Dr. Valentine Fuster, a world-renowned ...
(Date:12/2/2016)... ... December 02, 2016 , ... Sourced from the Isbre Springs beneath the ... its unmatched natural purity of just 6 ppm TDS (Total Dissolved Solids) in addition ... has been available in several ShopRite and FoodTown stores in NJ and received rave ...
Breaking Medicine News(10 mins):
(Date:12/2/2016)... , Dec. 2, 2016  The Addiction Treatment ... Academy of Managed Care Pharmacy (AMCP), has released ... better address the opioid addiction crisis, including through ... (MAT). ATAG,s newly released paper, "The ... to Naloxone," addresses many issues around gaps and ...
(Date:12/2/2016)... R.I. , Dec. 2, 2016 CVS ... its annual Analyst Day in New York City on Thursday, December 15, ... CVS Health leadership team will provide an in-depth review ... enhance shareholder value. The company will also discuss 2017 ... and video webcast of the event will be broadcast ...
(Date:12/2/2016)... Dec. 2, 2016   CytoSorbents Corporation (NASDAQ: ... its European Union approved CytoSorb ® cytokine adsorber ... patients worldwide, announced that Dr. Phillip Chan , ... Annual LD Micro Main Event investor conference held ... the Luxe Sunset Boulevard Hotel in Los ...
Breaking Medicine Technology: