NephCure Launches Advocacy Academy to Empower Rare Kidney Disease Advocates

Philadelphia, PA — May 1, 2025 — NephCure, a leading nonprofit organization dedicated to finding better treatments and a cure for rare, protein-spilling kidney diseases, is proud to announce the launch of its inaugural Advocacy Academy, a four-week program designed to build and strengthen the advocacy skills of rare kidney disease (RKD) patients, families, and allies.

Beginning today, Advocacy Academy participants will embark on a focused journey to become more effective champions for the RKD community. The course will offer targeted training on critical advocacy skills, including legislative engagement, storytelling for impact, and grassroots mobilization.

Graduates of the Advocacy Academy will be fully prepared to participate in Rare Kidneys on the Hill Day on July 23-24, 2025, where they will meet directly with elected officials to advocate for vital policies such as the New Era of Preventing End-Stage Kidney Disease Act (H.R. 1518) and other initiatives supporting RKD patients. Participants will also be empowered to lead advocacy efforts in their own state and local communities year-round.

“Our goal is to equip our advocates with the tools they need to create real change,” said Matthew Johnson, NephCure Director of Government Relations and Advocacy. “By investing in their development, we are strengthening the voice of the RKD community and ensuring policymakers hear directly from those most impacted.”

Throughout the course, participants will engage in interactive sessions, complete quick educational modules via NephCure’s Advocacy Accelerator platform, and work toward a final advocacy project to cap off their training.

NephCure’s Advocacy Academy efforts would not be possible without the generous support of its sponsors, Travere Therapeutics, Novartis, and Otsuka.

For more information about NephCure’s Advocacy Academy or to get involved in rare kidney disease advocacy, please click here or contact advocacy@nephcure.org.

About NephCure

NephCure’s mission is to empower people with rare, protein-spilling kidney disease to take charge of their health, while leading the revolution in research, new treatments, and care. Founded in 2000 by a group of committed patient parents, NephCure has invested more than $40 million in kidney disease research and helped create a landscape where there are now new treatments and more than 60 interventional drug trials for rare kidney diseases. NephCure is a U.S. tax exempt 501(c)(3) public charity.

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Turning Adversity Into Action | Patient Summit Seminar on Advocacy for RKD

Click to Watch…

During the 2024 Patient Summit, we were joined by 250+ patients and families who were able to gain knowledge and support surrounding their rare kidney disease and how to maintain their health.

Britta Dornan, NephCure’s Executive Director of Strategic Relations, hosted a panel with Texas Senator Kelly Hancock, Mary Baliker, Lisa Cimino, and Kimberly Queen surrounding their journey with RKD and how to turn their adversity from their disease into actionable cause.

Visit our Youtube page

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Kidney Health Advocates from Across the Country Urge Congress to Support the New Era Act During NephCure’s Rare Kidney Day at the U.S. Capitol

NephCure mobilized nearly 70 patients, advocates, and medical professionals to advocate for federal legislation to improve the understanding and treatment of rare kidney diseases.

Washington, DC, August 8, 2024 – NephCure, the only national kidney organization squarely focused on rare, protein-spilling kidney diseases, hosted its annual Rare Kidneys on the Hill Day in late July to advocate for the New Era of Preventing End-Stage Kidney Disease Act (H.R. 6790), bipartisan federal legislation to improve the lives of rare kidney disease patients. The annual Hill Day included nearly 90 in-person meetings with members of Congress and legislative staff followed by an evening reception for congressional staff, patients, and their families. Sixty-eight advocates, including six physician advocates, from 22 states traveled to Washington, D.C. to participate in the annual event. As a direct result of Hill Day, an additional eight members of Congress across political parties signed on to co-sponsor the New Era Act, bringing the total number of cosponsors to 14.

NephCure advocates and staff conducted nearly 90 in-person meetings with congressional staff from the U.S. Senate and House of Representatives, more than they had ever held at a Rare Kidneys on the Hill Day before. Advocates met with staff from Congressional offices including Representatives Jefferson Van Drew (R-NJ), Susan Wild (D-PA), Michael Lawler (R-NY), Glenn Thompson (R-PA), Bill Pascrell (D-NJ), and Bill Posey (R-FL).

“The New Era Act gives hope to the kidney disease community, offering a comprehensive approach to early detection, provider education, and innovative treatments that will enhance the quality of life for patients and their families,” said Matthew Johnson, Director, Government Relations and Advocacy at NephCure. “We are incredibly grateful to the dedicated advocates who participated in this Hill Day to urge Congress to pass the New Era Act to help usher in a new era of kidney health. It’s the courage and commitment of patients living with rare kidney diseases, their families, and the physicians who care for them that are the driving force behind NephCure.”

Introduced by Representatives Gus Bilirakis (R-FL) and Terri Sewell (D-AL), the New Era Act is bipartisan legislation aimed at transforming the way our nation approaches kidney health through early detection, research, and innovative treatments to combat kidney disease. The New Era Act seeks to expand access to screening and educational resources, invest in cutting-edge research, and enhance care coordination for patients with kidney disease. By prioritizing diagnosis and innovation, the New Era Act holds the promise of improving the lives of millions of Americans at risk of or living with kidney disease, while also reducing associated healthcare costs.

You can watch a video of Rare Kidneys on the Hill Day her e.

About NephCure

NephCure is the only kidney organization focused on nephrotic syndrome, FSGS, IgAN, and other rare, protein-spilling kidney diseases. They are working on creating a new reality where more rare kidney disease (RKD) therapies exist, and more patients get the care they need.

To date, NephCure has invested $40 million into rare kidney disease research, growing the number of interventional drug trials for RKD from zero to more than sixty and counting. Everything Nephcure does is for RKD patients, connecting them and their families to the best care, resources, and community support available. NephCure collaborates directly with government officials and industry partners to pave the way for more clinical trials, drug approvals, and community awareness. By building bridges between patients, families, healthcare providers, and other key stakeholders, they lift everyone up under one common purpose: to find a cure for rare kidney disease.

About the New Era Act

The New Era of Preventing End-Stage Kidney Disease Act (“New Era Act”), introduced by Representatives Gus Bilirakis (R-FL) and Terri Sewell (D-AL), has the potential to bring about significant positive changes in how we understand, treat, and study rare kidney diseases (RKD).

Empower Patients & Communities. The New Era Act will support public information and patient education campaigns, promoting informed communities and empowering patients to take charge of their health care journey.

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NephCure Launches National Coalition to Advocate for Policy Solutions that Revolutionize Rare Kidney Disease Care & Improve Patient Outcomes

We deserve better - New Era Act in Rare Kidney Disease Care - Advocacy

Philadelphia, PA, June 12, 2024 – NephCure, a leading national patient advocacy organization dedicated to accelerating research and finding better treatments for rare kidney diseases, today announced the launch of the New Era Coalition, a first-of-its-kind initiative uniting diverse communities to transform the landscape of research, treatment, and care for rare kidney diseases (RKD). The New Era Coalition brings together patient advocacy groups, medical experts, academic leaders, industry, and other key stakeholders to advance policy and regulatory solutions that move kidney care upstream. The New Era Coalition will advocate for federal and state policies that work to improve outcomes for RKD patients, including the New Era of Preventing End-Stage Kidney Disease Act, H.R. 6790 (“New Era Act”).

“We are proud to spearhead the formation of the New Era Coalition and unite communities to revolutionize rare kidney disease care, improve patient outcomes, and pave the way for a better future for those affected by these diseases,” said Britta Dornan, NephCure Executive Director of Strategic Relations. “For too long, rare kidney disease patients and caregivers have felt powerless and alone, but together we can effect real change. The time has come for policymakers in Washington and states to listen and take decisive action to improve treatment and care for rare kidney disease communities, including by passing the New Era Act this year.”

More than a dozen influential organizations and patient advocates have joined as New Era Coalition inaugural members to champion policy and advocacy solutions for the RKD community. Alongside NephCure, New Era Coalition members include patient advocates Mary Baliker, Seferiana Day, and Imani Mintz and organizations including the Alport Syndrome Foundation, American Kidney Fund, American Society of Nephrology, Black Women’s Health Imperative, Chronic Disease Coalition, IgA Nephropathy Foundation, International Society of Glomerular Disease, National Kidney Foundation, National Minority Quality Forum, Northwest Kidney Council, and the Rare Disease Diversity Coalition. New Era Coalition advisory members include Arkana Laboratories, Novartis Pharmaceuticals Corporation, Otsuka America Pharmaceutical Inc., Travere Therapeutics, and Vertex Pharmaceuticals.

During the 118^th Congress, the New Era Coalition will pursue robust efforts to ensure the passage of the New Era Act. Introduced by Representatives Gus Bilirakis (R-FL) and Terri Sewell (D-AL), the New Era Act stems from the community insights gained in 2020 by NephCure and partner organizations from the ‘We Deserve Better: Revolutionizing Rare Kidney Disease Roundtable’ and its resulting white paper.This legislation aims to help people with RKD by finding and treating diseases earlier, enhancing patient and provider education, and conducting more research. The New Era Act would lessen the impact of RKD on people’s lives and reduce costs for patients and the health care system in the long run.

About the New Era Coalition

The New Era Coalition brings together patient advocacy groups, medical experts, academic leaders, industry, and other key stakeholders, to transform the landscape of research, treatment, and care for rare kidney diseases (RKD).

About NephCure

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Advocacy Alert: Oppose Tax Reform

Advocacy Alert: Your Action Needed

Tell your Members of Congress to oppose tax reform provisions that harm individuals and families facing rare or chronic medical conditions

Take Action Now

Congress is currently working on a comprehensive overhaul of the U.S. tax code. The House has already passed a measure and the Senate hopes to consider its proposal early in December. The goal is for both chambers to pass their own bills before going to a conference to negotiate a final proposal. At this time, both the House and Senate tax reform bills include provisions that would harm those affected by rare and/or chronic medical conditions:

House Bill

Eliminates the Orphan Drug Tax Credit and provides no new alternative to continue to incentivize and facilitate the development of therapies for rare diseases.
Eliminates the Deduction for Medical Expenses which many patients and their families claim to help offset the costs of medical care.

Senate Bill

Eliminates Affordable Care Act’s individual mandate to purchase insurance and the Congressional Budget Office has estimated that this action will result in 13 million Americans losing health coverage.
- With fewer Americans (especially healthy individuals) buying into the insurance market, costs for insurance could drastically increase as the market becomes flooded with individuals that use health insurance frequently
Drastically restructures the Orphan Drug Tax Credit to make it much less generous and applicable in a way that would drastically reduce rare disease therapy development.

As Congress continues to consider tax reform, and which provisions will be included in any final measures, please contact your Senators and House Representative and ask them to oppose provisions undermining the Orphan Drug Tax Credit, the Medical Expense Deduction, and the individual mandate.

How To Take Action:

Visit www.senate.gov and identify the contact information for your two Senators by selecting your state.
- Use the contact information for the DC office, which will include a phone number starting with 202
Visit www.house.gov and identify the contact information for your House Representative by entering your zip code in the upper right corner.
Call the offices and ask for the Health Legislative Assistant’s voicemail box or e-mail address.
Use the script below to leave or send a message.

Script for email or phone calls:

Dear _______,

My name is _________ and I am a constituent from [home town]. As the legislative process for tax reform continues to move forward, please oppose any provisions eliminating or diminishing the Orphan Drug Tax Credit, the Medical Expense Deduction, and the individual mandate to purchase insurance. As an advocate for patients and commonsense tax policy, the aforementioned provisions are essential to maintaining medical innovation and promoting comprehensive care.

[Explain a little about your particular situation]

Thank you for time and for your consideration of my request.

Sincerely,

[Name]
[Address]

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Advocacy Alert! Action Required: Tell Congress to Preserve Protections for Chronic Disease Patients

Contact your House Member to ask them to support critical patient protections during the current healthcare reform effort

Tell Congress to Preserve Protections for Chronic Disease Patients

The leadership of the House of Representatives is continuing to work with conservative and moderate Republicans in an effort to repeal and replace the Affordable Care Act (ACA). Their proposal, the American Health Care Act (AHCA), was pulled from consideration a few weeks ago when it could not muster the votes to pass. However, House leaders continue to try and find common ground in order to modify the House leadership bill to make it passable.

The emerging House leadership plan includes a number of provisions that would be devastating for patients with chronic, complex, and costly medical conditions. The bill would remove protections for individuals with pre-existing health conditions. It would also eliminate the ACA’s Essential Health Benefits—federal quality standards for health insurance policies.

In place of these protections, the bill would expand health savings accounts and tax credits, establish state risk sharing subsidies, and leave it to states to determine which essential health benefits they will offer—likely leading to lower quality benefits for patients with costly diseases.

For patients with costly health conditions, they could likely never put enough money in a health savings account, nor would they be able to take advantage of a tax break associated with not utilizing healthcare services. Further, segregating costly patients into high risk pools has not worked in the past and would jeopardize access for the most vulnerable.

Elimination of the federal mandate that insurers offer a minimum level of benefits and allow states the flexibility to decide these benefits would likely mean that many states would have the incentive to not recommend comprehensive benefits to those with pre-existing health conditions. Insurers could also dramatically hike premiums for those with expensive chronic health care needs.

The House of Representatives could vote on this bill when it returns on April 24^th from the Easter recess. Grassroots outreach and educating Members of Congress about the needs of chronic disease patients continues to influence the overall debate. At this time, please reach out to your House member and ask them to protect patients and oppose discriminatory and dangerous provisions.

Take Action

Secure the contact information for your House representative by visiting House.gov and using the “Find Your Senator/Representative” query tool in the upper right corner.

Call the office and ask for the Health Legislative Assistant. You can either leave a voicemail or request their e-mail address and send them a message using the template below.

Politely and occasionally follow up on your request. You should have an expectation that the office will respond to your specific concerns.

If you would like to do more, you can request a brief meeting with the staff at your members’ local offices (the location information is on their websites).

+++++++++++++++++

Dear _______,

My name is _________ and I am a constituent from _________. I am also an advocate for the community of individuals impacted by _________ (condition). I write to urge you to maintain stability for chronic disease patients as you and your colleagues consider healthcare reform and changes to the American Health Care Act (AHCA). The AHCA in its current form would be devastating for my community.

Segregating high cost patients into high risk programs has not worked in the past, even with a federal subsidy. Additionally, eliminating the federal mandate that insurers offer a minimum level of benefits would likely mean that many states could offer substandard benefits for those with pre-existing health conditions or hike premiums for the most vulnerable Americans in desperate need of essential healthcare.

Please make sure any proposal maintains crucial patient protections that promote access and prevent financial hardships. Specifically, please ensure any future proposal:

maintains essential health benefits
prohibits pre-existing condition discrimination
prohibits lifetime and annual caps on benefits
allows young adults to stay on family coverage until they are 26
limits out-of-pocket costs for patients in a meaningful way

[Add a paragraph of brief information about the medical condition you are concerned about. Tell your story.]

Thank you for your time and your consideration of this letter. Please tell me how you have responded to my request.

Sincerely,

[Name]

[Address]

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August is Advocacy Month

Be an advocate now! Meet with your legislators locally during the upcoming congressional recess to educate them about Nephrotic Syndrome and FSGS and to ask for their assistance with key legislative and policy issues.

Background
Members of Congress will be in their districts throughout the month of August. Legislators use this time away from Capitol Hill to meet with their constituents in their local offices and learn about the issues impacting the people they represent. Advocates for NephCure Kidney International can use this opportunity to schedule meetings with the local offices of their members of Congress to educate legislators about Nephrotic Syndrome and FSGS and how they can assist and support affected individuals. You do not need to be an expert in government to be effective, you just need to be willing to tell your story. NephCure will assist you with the rest. Taking action is easy:

Inform NephCure of your interest in making a local congressional visit by emailing cfix@nephcure.org. NephCure can help you locate the contact information for the local congressional office near you and assist you with scheduling a meeting.
Consider making a local visit as a group, with other patient families from your area or with your friends, family, colleagues, or neighbors.
Review NephCure’s legislative agenda, and ask us any questions you have about the issues by emailing cfix@nephcure.org.
Meet with the local office, tell your story, ask them for their assistance on key issues, provide them with the leave behind materials, and then report back to NephCure by completing this evaluation form.

About the Issues
Each year, NephCure outlines a federal advocacy agenda that is focused on advancing medical research, facilitating treatment development, and improving healthcare. This year, NephCure has outlined the following issues as part of our legislative agenda:

Provide $38.1 billion in fiscal year 2019, a $2 billion increase
- Provide a proportional increase for the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), the branch of the NIH that would most directly support NS and FSGS research.
- Provide a proportional increase for the National Institute of Minority Health and Health Disparities (NIMHD). Minorities are disproportionately affected by NS and FSGS, and this branch of the NIH could provide specific funding opportunities and training programs to benefit the community.
- Support rare disease research at the National Center for Translational Sciences (NCATS).
Continue to include FSGS as a disease eligible for study through the Department of Defense’s Peer Reviewed Medical Research Program
- As a result of this funding opportunity, over $2 million has gone to FSGS research
- The NKI community must continue to advocate in order for FSGS to be included every year
Co-Sponsor the “Chronic Kidney Disease Improvement in Research and Treatment Act of 2017 (H.R. 2644)”.
- This bill is aimed at improving the lives of individuals with chronic kidney disease by supporting research that identifies and eliminates barriers for transplantation
- This bill allows individuals to retain access to private insurance
- This bill is promotes access to home dialysis, which is associated with higher quality of life and better health
- Finally, this bill pays particular attention to chronic kidney disease in minority populations and aims to improvement access to treatment for underserved areas

This agenda is comprised of contemporary legislative and public policy issues impacting the kidney community. However, to be successful in your meetings you will not need to remember complicated political information, you just need to tell your story. The materials below can help you have a productive and effective meeting with your Senators and Representatives.

Toolkit for Successful Meetings

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Advocacy in Action – Nephrotic Syndrome Research Funding Support Letters

P1130101 Thank you to all of you who wrote to your Senators and Representatives asking them to support funding for Nephrotic Syndrome and FSGS research! Through your efforts, appropriations letters were sent to relevant subcommittee chairs in the House and Senate encouraging them to increase funding for these diseases. Four Senators signed the Senate letter and 27 Representatives signed the House letter.

Background

Each year, Congress decides how much federal funding should be applied to medical research activities and provides guidance to the National Institutes of Health (NIH) on what conditions legislators are particularly interested in. Recently, Members of Congress have been deciding on the level of NIH funding for fiscal year (FY) 2017 and crafting the accompanying list of research recommendations. As a result of grassroots outreach, the community of individuals affected by glomerular diseases has educated many Member of Congress who have become champions on research and patient care issues.

House Letter

On behalf of the community, Congressmen Ryan Costello, Ted Deutch, and Alcee Hastings recently circulated a “Dear Colleague” letter on Capitol Hill that voices strong support for advancing research into FSGS and related conditions at NIH. We asked the entire NephCure community to encourage their representatives to sign on to the letter and the response was overwhelming!

Click here to see the letter and all 27 signatories.

Senate Letter

On the Senate side, Senator Debbie Stabenow lead a letter to the Defense Appropriations Subcommittee asking them to include FSGS as a condition eligible for study in the Peer-Reviewed Medical Research Program in the Fiscal Year 2017 Defense Appropriations Bill. Click here to read the letter and see the signatories.

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NephCure Kidney International and Local NY Teenager Sydney Levine Launch MARCHing to Awareness

FOR IMMEDIATE RELEASE

Contact Information:
NephCure Kidney International
Erin Russell
erussell@nephcure.org

NephCure Kidney International and Local NY Teenager
Sydney Levine Launch MARCHing to Awareness

{Melville, NY, March 2, 2016} – NephCure Kidney International and Sydney Levine, from Melville , NY, will be MARCHing to Awareness for the month of March. Sydney, 15, rang the closing bell at the NYSE yesterday to kick off her month long drive to promnote awareness of chronic kidney disease. Sydney’s brother, Matthew, 12, has Focal segmental glomerulosclerosis (FSGS), a rare kidney disease for which there is no cure.

MARCHing to Awareness is a campaign aimed at promoting f National Kidney Disease Awareness Month and will target a different activity each day of the month. Yesterday, March 1, Sydney spoke in front of the Suffolk County Legislature and rang the NYSE closing bell.

“Academics aside, I wanted to express my admiration for Matthew in the way he conducts himself. In spite of his condition, his positive attitude never waivers. I cannot remember the last time I didn’t see him with a smile on his face. Many kids would use his condition as a crutch or an excuse; he appears to use it as a motivator. I, for one, am inspired by this. I hope this month is just a start to finding a permanent solution to what Matthew and other kids like him are going through,” Chris Regini, Matthew and Sydney’s science teacher.

For more information, please visit www.nephcure.org or search #KidneyAwarenessMonth

NephCure Kidney International is the only organization committed exclusively to support research seeking the cause of the potentially debilitating kidney disease Focal Segmental Glomerulosclerosis (FSGS) and the diseases that cause Nephrotic Syndrome, improve treatment, and find a cure.

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Advocacy Alert! Ask your Senators to sign FSGS funding letter

Contact both your Senators and ask that they sign on to Senator Debbie Stabenow’s (D-MI) letter supporting the inclusion of “focal segmental glomerulosclerosis (FSGS)” as condition eligible for study through the Department of Defense Peer-Reviewed Medical Research Program during the Fiscal Year (FY) 2017 appropriations process (Urgent – Deadline for Signatures is March 11)

Background

Each year, the United States Senate crafts an annual Department of Defense (DoD) appropriations bill, which includes a list of conditions that are deemed “eligible for study” through the Peer-Reviewed Medical Research Program (PRMRP). In order for a condition to be included, Senators need to support the condition and officially ask for its inclusion. Senators have many competing appropriations priorities and in order for them to support a condition-specific request, they need to be educated and asked to do so by their constituents. (You)

As a result of grassroots outreach, the Senate has recognized FSGS as a condition eligible for study annually for a number of years. This support allows FSGS researchers to compete for nearly $278 million in federal research funding each year.

Senators are currently working on the FY 2017 DoD appropriations bill and deciding which conditions will be included on the next PRMRP eligible conditions list. Being included on the list one year is no guarantee of being included again in the next year. At this critical time, please reach out to the offices of your Senators and ask that they “sign on to Senator Debbie Stabenow’s letter supporting the inclusion of “focal segmental glomerulosclerosis (FSGS)” in the DOD PRMRP’s eligible conditions list for FY 2017.” Click here to read the letter.

Take Action

Recommended: Copy and paste the email template below, add your info (where prompted) and send it to NKI’s Washington Representative Phil Goglas at goglas@hmcw.org . Phil will forward your e-mail on to the appropriate staff person in your Senators’ offices on your behalf.

Reach out yourself to the Health Legislative Assistant in the Washington, DC, offices of both your U.S. Senators and ask for their support.
To identify the contact information for your Senators’ Health LAs, simply go to Senate.gov and select your State. If you call the office (the 202 number), the staff will tell you the name of the Health LA and let you leave a voicemail (you can use the message below as a script). E-mail is more effective, but the receptionist will not likely provide you with the Health LA’s e-mail address.
If you would like to e-mail the Health LAs in the offices of your Senators, please contact Phil at goglas@hmcw.org. He will provide you with their name and e-mail address.

Congressional deadlines are fast approaching, so you must reach out to your Senators this week (the first week of March) or early next week to have an impact.

Email Template

Dear Senator ____________,

Senator Debbie Stabenow is currently circulating a Senate sign on letter in support continuing to include “Focal Segmental Glomerulosclerosis” (FSGS) in the list of conditions deemed eligible for study through the Department of Defense Peer-Reviewed Medical Research Program (PRMRP) during the FY 2017 appropriations process. On behalf of FSGS impacted families across the state, please contact Sam Schuiteman in Senator Stabenow’s office at Sam_Schuiteman@stabenow.senate.gov or 4-4822 to join this important letter by COB Friday, March 11^th.

FSGS is a rare and devastating kidney disease that is a leading cause of end-stage renal disease (ESRD). Nearly 30,000 veterans suffer from ESRD and an additional 3,000 veterans are expected to reach ESRD each year with significant health disparities among African American due to variants of the APOL1 gene. In addition, researchers suggest there are new opportunities for investigating FSGS in the military population with respect to environmental exposures. More needs to be done to improve our understanding of the impact of FSGS among our military personnel and veterans. FSGS has been part of the PRMRP for some time, including FY 2016, and continued participation will lead to further scientific progress.

[OPTIONAL: Briefly tell your FSGS story in 2-4 sentences]

Thank you for your time and your consideration of this request.

Sincerely,

[Your Name]

[Your Address]

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Your Advocacy Creates Change – Living Donor Protection Act

P1130101 2/26/16 – Because of your efforts on Capitol Hill, the Living Donor Protection Act of 2016 was introduced yesterday by Rep. Jerrold Nadler (D-NY) and Rep. Michael Burgess, MD (R-TX) in the House, and Sen. Mark Kirk (R-IL) and Sen. Kirsten Gillibrand (D-NY) in the Senate. This legislation promotes organ donation and protects the rights of living organ donors. It is made possible in part by YOUR action on Kidney Community Advocacy Day, a joint advocacy event with the support of 16 separate kidney organizations and led by the American Society of Nephrology (ASN).For many patients with kidney failure, a transplant can be the best form of kidney replacement therapy. But today, more people than ever are waiting for this life-saving measure: a patient is added to the kidney transplant wait list every 14 minutes. In 2014, there were 101,168 people on the kidney transplant wait list, but only 5,536 living donor transplants performed that year. The Living Donor Protection Act would increase the number of kidney transplants by eliminating pointless barriers to donation.

This bill prohibits insurance companies from denying or limiting coverage and from charging higher premiums for living organ donors. It also clarifies that living organ donors can use Family Medical Leave Act time to recover from donation surgery and maintain job security. This important legislation will allow more Americans to consider living organ donation and help countless people receive the gift of life.

NephCure Kidney International strongly supports this bill and joins ASN and the National Kidney Foundation in urging members of Congress to support this bi-partisan legislation.

Want to make sure this bill becomes law? Tell your Senators and Representatives why it’s important to you, and urge them to cosponsor it. You can find supplemental documents to send to your congresspeople here.

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Be Your Own Best Advocate

Hi, my name is Amanda, I’m an attorney, live in Chicago, and I have FSGS. When I was 26 I began gaining weight unexpectedly and a kidney biopsy a couple weeks later confirmed the diagnosis. Immediately I began steroid treatments, and responded well; however when we attempted to wean off the steroids, the symptoms returned.

After another failed round of steroids, I temporarily lost my health insurance and was unable to see a doctor. Fortunately, I was able to eventually obtain insurance and then was quickly admitted to the hospital because the swelling was so extreme. I’ve been on Cyclosporine, Cellcept and now started Prograff and fortunately my kidney function has remained stable.

Throughout my treatments, NephCure has been an important resource for me, grateful for the opportunity to interact with other patients and to talk to experts in the field.

My friends & family think I am fierce – I won’t let anything stand in my way. Some people assume that a rare disease diagnosis would stop your life in its tracks. But I’ve learned that things that would have caused anger or provoked frustration in the past seem unimportant now. Life is way too short to spend fighting or being upset about the little things. My husband Al and I now spend time advocating, fundraising, and working tirelessly with NephCure to help fund the cure for FSGS. We know what we want and what we all want is a cure!

We need more, we want more, and we want to give more. Won’t you join us in this fight?

Sincerely, Amanda

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Advocacy Alert: Your Action Needed

How To Take Action:

Advocacy Alert! Action Required: Tell Congress to Preserve Protections for Chronic Disease Patients

Take Action

Be an advocate now! Meet with your legislators locally during the upcoming congressional recess to educate them about Nephrotic Syndrome and FSGS and to ask for their assistance with key legislative and policy issues.

Background

House Letter

Senate Letter

Our Mission

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