Lymphatic Education & Research Network (LE&RN)
Fighting lymphedema and lymphatic disease through education, research, and advocacy.
Started 3 petitions
Designate “LD Awareness & Cures” as the 2019 World Health Day Campaign for WHO
Last year, working closely with supporters, the Lymphatic Education & Research Network (LE&RN) fought for long overdue recognition of lymphedema (LE) and lymphatic diseases. The result was that World Lymphedema Day was celebrated around the world. This is what is possible when we unleash our energy and focus it on the change we demand. These represent just a few of the celebrations, announcements, and legislative resolutions around the globe recognizing this achievement: Advocates from over 25 countries participated in the kick-off video. The United States Senate unanimously passed a bill establishing March 6 as World Lymphedema Day. Ottawa, Canada became the first municipality to issue a Proclamation honoring the day. India announced WLD at their AIIMs Surgical Conference in New Dehli. Europe connected with the Diplomatic Courier to present at their Well Being Conference. South America created a video with advocates from every country stating their support and advocacy. The President of the Lymphedema Association of Galicia in Spain wrote, “Not only are you bringing about great change in lymphedema for those who live in the USA, but also a very big change for the world. God bless World Lymphedema Day!” We now join in solidarity with global lymphedema advocates to ask that the World Health Organization (WHO) declare "LD Awareness & Cures" the focus of WORLD HEALTH DAY 2019. Our goal is to make lymphedema (LE) and lymphatic diseases (LD) a global priority. Our goal is to engage the governments and researchers around the world to dedicate themselves to finding advanced treatments and cures. Our goal is to address the incredible psycho-social burden of those with LE who have felt themselves marginalized, are unable to find treatment and whose quality of life has been negatively transformed by this disease. In keeping with these goals, we ask that the World Health Organization (WHO) declare "LD Awareness & Cures" the focus of WORLD HEALTH DAY 2019. Fact: WHO estimates that over 150 million people worldwide have secondary LE Fact: NIH estimates that primary LE could affect as many as 1 in 300 live births Fact: WHO estimates that over 120 million are infected with lymphatic filariasis (LF), leaving 40 million disfigured and incapacitated WHO’s World Health Day is recognized on April 7. It was established to be a call to action for critical health issues affecting the world’s population. The World Health Day 2016 campaign was “Beat Diabetes.” Its objective was to increase awareness of the burden and consequences of that disease worldwide. The World Health Day 2017 campaign was “Depression,” which kicked-off in October 2016, and is focused on prevention and treatment. The World Health Day 2018 campaign is “Universal Health.” Now, we ask the lymphatic and LE community to sign a petition asking that WHO make World Health Day: “Lymphedema: Awareness & Cures.” We need awareness so that medical practitioners and therapists are prepared to treat all who come to them with LE and lymphatic diseases. We need awareness to inspire communities around the world to embrace this as a common cause. We need awareness to encourage our greatest minds to engage in research and our institutions to then make a priority of funding this research. And then we need to make finding a cure a global priority. Miracles await if we dedicate ourselves to finding them. Success is up to us. Success is up to you! Make your voice heard and sign this petition. Sincerely, William Repicci Executive Director, LE&RN
Urge U.S. Senate to approve $70M NIH funding for lymphedema and lymphatic disease research
United States Senator Charles Schumer (D-NY) has requested “$70 million in lymphatic and lymphedema research funding be appropriated to the Office of the Director at NIH to support extramural interdisciplinary research relevant to the lymphatic system in health and disease.” This would be an unprecedented achievement in making lymphatics and lymphedema a national heath priority. Its impact on future treatments and cures must not be underestimated. We must fight for this with everything available to us. The Lymphatic Education & Research Network (LE&RN), its spokesperson Kathy Bates, the research community, and Senator Schumer have brought this issue to the forefront. It is now up to us, as a community, to get this funding in the budget. The Senate Appropriations Subcommittee on Labor, Health, and Human Services must hear from you. First, sign this petition. Herein, the signers of this petition call upon committee members to add the Report Language of Senator Schumer to the 2017 Committee Appropriations bill. Second, write directly to the Committee Members to voice your support. Links to their webpages are provided below. Both actions are needed to secure this historic funding. Be part of the greatest lymphatic disease and lymphedema research initiative in history. Make this just the beginning. This is where it all starts, and it doesn’t happen without you. Sincerely,William RepicciExecutive Director, LE&RNSenate Appropriations Subcommittee on Labor, Health, and Human Services members:Senator Roy Blunt (Chairman, R-MO)Senator Patty Murray (Ranking Member, D-WA)Senator Jerry Moran (R-KS)Senator Richard Shelby (R-AL)Senator Thad Cochran (R-MS)Senator Lamar Alexander (R-TN)Senator Lindsey Graham (R-SC)Senator Shelley Moore Capito (R-WV)Senator James Lankford (R-OK)Senator Richard Durbin (D-IL)Senator Jack Reed (D-RI)Senator Jeanne Shaheen (D-NH)Senator Jeff Merkley (D-OR)Senator Brian Schatz (D-HI)Senator Tammy Baldwin (D-WI)Senator John Kennedy (R-LA)Senator Marco Rubio (R-FL)Senator Chris Murphy (D-CT)Senator Joe Manchin (D-WV)
Declare March 6th "World Lymphedema Day™"
The First Annual World Lymphedema Day™ — March 6, 2016 The time has come to mount a worldwide campaign against a Lymphedemic®. Lymphedema (also spelled "lymphoedema") and lymphatic disease advocates from around the world are joining together to establish the first annual World Lymphedema Day. March 6th was chosen by advocates in India, Europe and elsewhere to coincide with the current recognition of this day in the United States, Canada, and Australia. The Lymphatic Education & Research Network fights lymphedema and lymphatic disease through education, research and advocacy and is proud to be the international sponsor of World Lymphedema Day. Why We Need World Lymphedema DayGreat attention is paid to the battle against cancer. Yet, most people haven’t heard of lymphedema, which cancer frequently leaves in its wake. We hear little of the children born with lymphatic malformations or those who inherit lymphedema. There is silence on the issue of wounded war veterans, civilian casualties and others who suffer from lymphedema due to physical trauma or as a result of surgery. Too many who suffer feel alone. Too many medical professionals remain uneducated about this disease or underplay the devastating impact it has on a person’s quality of life. Too many go without the necessary therapeutic care. And this tragedy is compounded when government and private health insurers deny patients coverage for even the universally accepted treatments that this disease demands. The World Health Organization estimates that over 150 million people worldwide have secondary lymphedema, while the National Institutes of Health (NIH) states that the incidence of primary lymphedema could be as high as 1 in 300 live births. Of the 1.4 billion people in 73 countries threatened by lymphatic filariasis, commonly known as elephantiasis, 120 million are currently infected and 40 million of these patients are disfigured and incapacitated by the disease. The Centers for Disease Control and Prevention (CDC) warns that the incidence of secondary lymphedema among cancer survivors is between 20-40%. Lymphedema is estimated to affect up to 10 million people in the United States alone according to Stanford University. This represents more Americans than those suffering from AIDS, Parkinson’s disease, Muscular Dystrophy, Multiple Sclerosis and ALS—combined. Finally, the continuum of diseases impacted by the lymphatic system includes heart disease, AIDS, diabetes, rheumatoid arthritis and cancer metastasis. Yet, lymphatic diseases routinely go undiagnosed and untreated, and research is grossly underfunded. A Call to ActionThe message from lymphedema and lymphatic disease advocates is clear. “Lymphedema and lymphatic diseases are ready to take their place as international priorities.” The days of being invisible are over. Together, we announce World Lymphedema Day to be celebrated on March 6th. Join this movement by signing the online petition. Let’s show that every country around the globe supports this cause. LE&RN and its international members are inviting patients, their family and friends, advocates, politicians and treatment practitioners from every country to make their voices heard by signing the petition to recognize World Lymphedema Day. Together, we can change the world. William RepicciExecutive DirectorLymphatic Education & Research Network About LE&RN Founded in 1998, the Lymphatic Education & Research Network is a 501(c)(3) not-for profit organization whose mission is to fight lymphatic disease and lymphedema through education, research and advocacy. LE&RN provides valuable education resources for the millions of people who suffer from lymphedema and lymphatic disease. LE&RN fosters and supports research that can deepen the medical community's understanding of the lymphatic system. For more information about lymphatic disease or the Lymphatic Education & Research Network, please visit www.LymphaticNetwork.org or call (516) 625-9675.