Navigation Links
Patient Advocacy Teams Help Turn World Rare Disease Day 2009 Into A Global Success
Date:3/11/2009

Children, Schools and Businesses Nationwide Team Up To Support The Project--The Children's Rare Disease Network™

Laguna Woods, Calif. (PRWEB) March 11, 2009 -- Children, businesses, schools and organizations from states all across the country including California, Nevada, Pennsylvania and Wisconsin teamed up on February 28, 2009, for World Rare Disease Day to call attention to the serious global public health issues facing millions of American suffering from Rare Diseases. More than 500 individuals, organizations and companies signed on as partners to support The Project - The Children's Rare Disease Network™ and the larger coalition of organizations supporting the special global observance.

"We are sincerely grateful to the countless people and businesses that supported our advocacy driven fundraising and awareness activities this year," said Nicole Boice, founder and CEO of The Project - The Children's Rare Disease Network. "This is an important first step to building greater global awareness of Rare Disease which often carries life-threatening diagnosis for millions of children. We are already actively working towards innovative awareness campaigns for 2010."

According to the National Institutes of Health (NIH), there are nearly 7,000 rare diseases affecting nearly 30 million Americans and countless others around the world. Approximately 1 in 10 American's suffer from what is termed Rare Disease with children representing a large percentage of the Rare Disease cases.

Grassroots Mobilization: Collecting Change, Bakes Sales, Toy Raffles, Giveaways

In the week leading up to World Rare Disease Day 2009, a number of fundraising and awareness events were held by Rare Disease Advocates. Some of the activities and events included:


    Source: PRWeb
    Copyright©2009 Vocus, Inc.
    All rights reserved

    Page: 1 2 3

    Related medicine news :

    1. The Nation's First Federally Certified Patient Safety Organization Chooses Quantros Patient Safety Organization Manager
    2. Study of 160,000 Medicare Patients Shows Hispanics Have Greater Costs for End-of-Life Care
    3. Baxa Corporation Launches Culture of Safety Campaign to Recognize National Patient Safety Awareness Week
    4. Insmed Announces FDA Issues Statement Regarding Position on Allowing Patients With ALS Access to IPLEX(TM) Under an IND
    5. Englewood Hospital Marks 15 Years of Leadership in Improving Patient Outcomes Through Bloodless Medicine and Surgery
    6. Patient Safety Cant Wait - NQF Calls for Faster Spread of Safe Practices
    7. Immune-based drug approved in Europe for pediatric cancer patients
    8. Miami Heat Fan Favorite and NBA All-Star Alonzo Mourning Visits Florida Legislature, Governor to Urge Needed Coverage for Florida Kidney Patients
    9. Journal of American College of Surgeons finds lung transplantation should be used in older patients
    10. For Primary Care, More Patients Are Seeing Specialists
    11. Celator(R) Pharmaceuticals Enrolls First Patient in Its Phase 2 Study of CPX-351 in Acute Myeloid Leukemia in First Relapse
    Post Your Comments:
    *Name:
    *Comment:
    *Email:
    (Date:12/25/2014)... When head lice hits a home or school, parents ... rid of it while keeping it from taking over the ... the solution right in their neighborhood: Lice Troopers . ... full spectrum head lice screening and treatment services to families ... Biscayne, Brickell, Coconut Grove, Kendall, Pinecrest and South Miami. , ...
    (Date:12/25/2014)... 25, 2014 (HealthDay News) -- The risk of burns ... so you need to be extra cautious, an expert ... see a significant increase in patients coming in with ... Suffolk County Volunteer Firefighters Burn Center of Stony Brook ... be full of joy, but if not careful, could ...
    (Date:12/25/2014)... Dennis Thompson HealthDay ... Researchers could be closing in on a "fountain of youth" ... the health of older adults, a new study suggests. ... given a drug that targets a genetic signaling pathway linked ... Novartis report. The experimental medication, a version ...
    (Date:12/25/2014)... “ SmileStix ” was featured on NewsWatch as part ... mobile applications on the iOS, Android, and Windows markets. Andrew ... the app review and shared with viewers how this is ... old saying goes, “A picture says a thousand words.” It’s ... a single image, because each picture holds a unique and ...
    (Date:12/25/2014)... 25, 2014 Each year trauma accounts ... million hospital admissions across the nation (according to ... CDC’s National Hospital Ambulatory Medical Care Survey ... conducted in 2010. They estimated that there were between ... in a primary diagnosis of broken bone or fracture. ...
    Breaking Medicine News(10 mins):Health News:Coral Gables Florida Gets Ready to Be Lice-Free with Lice Troopers 2Health News:Don't Let Burns Mar Your Holidays 2Health News:Researchers Take 'First Baby Step' Toward Anti-Aging Drug 2Health News:Researchers Take 'First Baby Step' Toward Anti-Aging Drug 3Health News:An Application to Create Custom Stickers was Featured on NewsWatch Television on December 19, 2014 2Health News:Every Year Four Million Emergency Department Visits Result from Accidents Involving Bone Trauma 2Health News:Every Year Four Million Emergency Department Visits Result from Accidents Involving Bone Trauma 3Health News:Every Year Four Million Emergency Department Visits Result from Accidents Involving Bone Trauma 4
    ... that a commonly available antibiotic can improve the quality ... also generate significant health care savings. , Results of ... and Critical Care Medicine, a top international journal, indicate ... conjunction with current asthma treatment. , The study was ...
    ... many preventable -- were diagnosed this year, American Cancer Society ... continues to cut a deadly swath across the globe, with ... malignancy diagnosed worldwide in 2007, with 7.6 million people dying ... & Figures , finds that 5.4 million of those cancers ...
    ... Incisionless surgery is the,most significant advancement in surgical ... a wide variety of academic and private hospitals ... procedures already,performed globally. Despite the fact that both ... over 50 U.S. centers,have already been trained to ...
    ... Data Also Underscores Dissatisfaction with Treatment Experience, ... of Internet as Informational Resource -, SAN ANTONIO, ... metastatic breast cancer (MBC) is as important as the ... a,survey presented here today at the 30th Annual San ...
    ... − Two studies from Mayo Clinics site in Jacksonville, ... brain, have found that women whose tumors do not ... outcomes. Because of this, these patients should be treated ... a metastasis, say the investigators, who presented their findings ...
    ... Dec. 15 From eliminating pain to,improving an ... attention these days., Gone is the time ... cleaning or pulling of the teeth, according to ... the Journal of the American Veterinary Medical,Association. Today, ...
    Cached Medicine News:Health News:Antibiotic treatment targets difficult asthma 2Health News:Cancer Killed Almost 8 Million Worldwide in 2007 2Health News:Cancer Killed Almost 8 Million Worldwide in 2007 3Health News:Cancer Killed Almost 8 Million Worldwide in 2007 4Health News:EndoGastric Solutions Opens Three Training Centers to Keep Up with Demand from Surgeons Wanting to Learn StomaphyX(TM) Procedures 2Health News:EndoGastric Solutions Opens Three Training Centers to Keep Up with Demand from Surgeons Wanting to Learn StomaphyX(TM) Procedures 3Health News:EndoGastric Solutions Opens Three Training Centers to Keep Up with Demand from Surgeons Wanting to Learn StomaphyX(TM) Procedures 4Health News:New Survey Underscores Importance of Psychosocial and Educational Needs Among Women with Advanced Breast Cancer 2Health News:New Survey Underscores Importance of Psychosocial and Educational Needs Among Women with Advanced Breast Cancer 3Health News:Survival shortened when ER/PR negative breast cancer spreads to the brain 2Health News:Survival shortened when ER/PR negative breast cancer spreads to the brain 3Health News:Veterinary Dentistry Opens Wide 2
    (Date:12/24/2014)... YORK and LONDON , ... global orthopedic industry are expected to grow at an ... in terms of value and volume. Hip, knee and ... developed world while in emerging economies they have a ... rates are challenging the use of composites. Non-metallic orthopedic ...
    (Date:12/24/2014)... , December 24, 2014 ... on Global Disposable Syringe Industry of 178 ... online business intelligence library. The ... Syringe Industry is a professional and deep ...  For overview analysis, the report introduces Disposable ...
    (Date:12/24/2014)... Tianyin Pharmaceutical Co., Inc. (NYSE MKT: ... biopharmaceutical, modernized traditional Chinese medicine (mTCM), branded generics ... the Company achieved the Public Notice (Gong Shi) ... of TPI,s Qionglai Facility (QLF) from the China ... period is a significant procedure of GMP certification ...
    Breaking Medicine Technology:Use of Composites in Orthopedic Industry to Reach $596 Million by 2020 2Use of Composites in Orthopedic Industry to Reach $596 Million by 2020 3World Disposable Syringe Market 2014 Report: China and Regional Analysis 2World Disposable Syringe Market 2014 Report: China and Regional Analysis 3World Disposable Syringe Market 2014 Report: China and Regional Analysis 4World Disposable Syringe Market 2014 Report: China and Regional Analysis 5TPI QLF Achieved Public Notice Status of GMP Certification 2TPI QLF Achieved Public Notice Status of GMP Certification 3
    The IDENTI-PRINT II ID system functions as a complete, hospital wide patient identification system. It integrates the benefits of bedside labeling into a multipurpose ID band that consolidates admitt...
    ... is an optional component that extends ... and difficult environments. AeroScout Location Receivers ... capabilities packaged in small, easy to ... The Location Receiver receives transmissions and ...
    ... VerdaSees Navigaton™ software facilitates real ... of two modules: the first module ... RFID reader devices and the database ... the second module is the user ...
    ... VerdaSee Patient Bracelet-ID™ provides a solution ... personnel to elopement or unauthorized movement ... issues are a key concern. Certain ... care, Alzheimer's victims, patients with highly ...
    Medicine Products: