NephCure Kidney International ®

Saving Kidneys, Saving Lives

Advocacy Alert: Oppose Tax Reform

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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]

Advocacy Alert: Action Required

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Senators Lindsey Graham (R-SC), Bill Cassidy (R-LA), Dean Heller (R-NV), and Ron Johnson (R-WI) recently introduced legislation known as Graham-Cassidy to repeal and replace the Affordable Care Act (ACA). The hope of these lawmakers was to hold yet another vote on repeal before October 1st, so a simple majority (51 votes) is all that is needed to pass the measure.

Unfortunately, the Graham-Cassidy proposal is more extreme than other recent Senate proposals and would be particularly harmful to individuals and families impacted by chronic health conditions. Specifically, the new proposal would:

  • Allow insurance companies to charge more for those individuals with pre-existing health conditions
  • Allow states to more easily opt out of requiring quality health insurance options and comprehensive benefits
  • Expand the ability for individuals to purchase low quality health insurance benefits in lieu of more comprehensive coverage
  • Eliminate the individual and employer mandates
  • Dramatically reduce the federal commitment to Medicaid expansion
  • Eliminate the Prevention and Public Health Fund

While this effort was initially dismissed by many as a “Hail Mary,” it has quickly gained support and could be voted on next week. In order to protect patients with chronic conditions, please contact your Senators and ask them to oppose the Graham-Cassidy repeal and replace proposal.

Take Action

  • Contact the health Legislative Assistants (LAs) in the offices of your two U.S. Senators and use the message below for a voicemail or brief e-mail. The contact information for your Senate offices can be found at Senate.gov.

Template For Emailing / Calling / Faxing Your Senators

Dear _______,

My name is _________ and I am a constituent from [home town]. On behalf of patients with chronic health conditions, I urge the Senator to oppose the Graham-Cassidy healthcare proposal. This proposal would be absolutely devastating to individuals and families affected by chronic illness that rely on access to quality, affordable health care.

[Explain a little about your particular situation]

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

Sincerely,
[Name]
[Address]

Ask your Senators to vote NO on the revised Senate health reform bill

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ADVOCACY ALERT: ACTION REQUIRED
Ask your Senators to vote NO on the revised Senate health reform bill

The Senate recently released a revised version of its healthcare reform bill entitled The Better Care Reconciliation Act (BCRA). This bill, like the House version, proposes state waivers, continuous coverage penalties, and deep cuts to Medicaid that would harm patients with costly and chronic health conditions. David O. Barbe, M.D., President of the American Medical Association, stated that “the revised bill does not address the key concerns of physicians and patients regarding proposed Medicaid cuts and inadequate subsidies that will result in millions of Americans losing health insurance coverage.”

This version of the BCRA adds an amendment from Senator Ted Cruz that would allow insurers to offer plans that do not meet Essential Health Benefits requirements, as long as these insurers offer at least one plan that does. Chris Hansen, President of the American Cancer Society Cancer Action Network, stated that the amendment and the bill as it stands would “leave patients and those with pre-existing conditions paying more for less coverage and would substantially erode the progress our nation has been trying to make in providing affordable, adequate, and meaningful coverage to all Americans.”

This bill harms patients with chronic and complex illnesses in the following ways:

  • Allows insurers to offer less comprehensive policies through a provision that allows states to waive the federal mandate on Essential Health Benefits
  • Includes an amendment that would allow insurers to offer low quality health insurance benefits in place of comprehensive benefits under current law
  • Allows states that seek and receive waivers to opt out of limits on patient out-of-pocket costs and annual/lifetime caps
  • Contains a continuous coverage requirement, which would charge a penalty to individuals with a gap in their insurance coverage
  • Ends Medicaid expansion, leaving millions of the most vulnerable individuals without critical care.

The Congressional Budget Office (CBO) is anticipated to release its analysis of the bill by Monday, and a vote on the bill could take place anytime before the Congressional recess in August.

Take Action:

  • Secure the contact information for your Senators by visiting www.Senate.gov and using the “Find Your Senator” 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 Senators’ local offices (the location office information is on their websites).

 

Template For Emailing Your Senators

Dear _______,

My name is _________ and I am a constituent from _________. I am also an advocate for (your health condition). I write to urge you to vote NO on the Senate’s healthcare bill.

The Senate healthcare bill would:

  • Jeopardize patient access to quality, affordable & available coverage
  • Cut-off health coverage for millions of Americans
  • Bring back annual and lifetime caps on coverage
  • Price people with pre-existing conditions out of the insurance market

I write to urge you to maintain stability for chronic disease patients as you and your colleagues consider healthcare reform. It is my hope that you and your colleagues in the Senate will preserve key patient protections and respect the circumstances of those combatting chronic and costly illnesses.

Specifically, please ensure any Senate proposal:

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

[Add a paragraph of brief information about your condition. Tell your story.]

Patients need a transparent, bipartisan effort to stabilize the insurance market, bring down premiums, and retain the patient protections that are so critical to patients, consumers and their families. We urge the Senate to go back to the drawing board, and work together to find ways to protect patients with serious illness.

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

Sincerely,

[Name]
[Address]

Advocacy Alert: Action Required!

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Ask your Senators to Vote NO on the Senate Healthcare Repeal Bill

Last week, the Senate released their version of health reform legislation entitled The Better Care Reconciliation Act (BCRA). The bill was slated for a vote this week but, after fierce opposition from the public health community, the vote has been postponed until after the July 4th recess. The bill is expected to undergo some changes in order to gain the support of Senators that have thus far withheld support of the measure.

The bill, while seeking to reduce insurance premiums and provide coverage options to individuals with high healthcare costs, harms patients in the following ways:

  • Limits care for people with pre-existing conditions by allowing insurers to offer less comprehensive policies through a provision that allows states to waive the federal mandate on essential health benefits. While insurers will still be required to cover individuals with pre-existing conditions, these individuals may not have all their treatments and services covered.
  • Decreases insurance coverage by allowing states to seek and receive waivers to opt out of limits on patient out-of-pocket costs and annual/lifetime caps.
  • Contains a continuous coverage requirement, which would charge a penalty to individuals with a gap in their insurance coverage.
  • Increases costs for older Americans. Insurers would be allowed to charge older Americans five times more than younger Americans for the same coverage.
  • Ends Medicaid expansion, leaving millions of the most vulnerable individuals without critical care.

The Congressional Budget Office (CBO) has stated that the BCRA would cause:

  • 15 million more people to be uninsured next year.
  • In ten years, that number would grow to 22 million people uninsured.
  • Patient out-of-pocket expenditures to rise dramatically, especially for people in states that opt for Essential Health Benefits waivers.
  • The prohibitions on annual and lifetime benefit caps could be eliminated in states that opt for Essential Health Benefits waivers.

Now is the time to weigh in with your Senators and make sure they oppose the BCRA as currently proposed and make sure they go back to the drawing board and work together to find ways to protect patients with chronic and costly medical conditions.

Take Action:

  • Secure the contact information for your Senators by visiting www.Senate.gov and using the “Find Your Senator” 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 found here. 
  • 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 Senators’ local offices (the location office information is on their websites).

 

Advocacy Alert! Ask Your Senator to Support FSGS Research Funding

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Advocacy Alert! Ask Your Senator to Support FSGS Research Funding

Ask your Senator to to sign on to Senator Stabenow’s letter requesting that FSGS be eligible for research funding under the Department of Defense’s Peer Reviewed Medical Research Program for fiscal year 2018

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. You can read about FSGS researchers that received funding for projects through this program here. 

Take Action

  •  Secure the contact information for your Senator by visiting www.Senate.gov and using the “Find Your Senator” query tool in the upper left corner of the page.
  • 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. If you call, you can use the template as a guide in your conversation.
  • Politely and occasionally follow up on the request. You should have an expectation that the office will respond to your specific concerns.

Email Template

Dear _______,

My name is _________ and I am a constituent from _________. I am also an advocate for the Focal Segmental Glomerulosclerosis (FSGS) community. FSGS is a rare and devastating disease that attacks the kidney’s filtering units (glomeruli), causing serious scarring, which often leads to permanent kidney damage and even failure. FSGS is a leading cause of end-stage renal disease (ESRD), kidney dialysis, and transplantation. FSGS is disabling, potentially fatal, and treatment options remain limited for affected individuals.

Please join Senator Debbie Stabenow in requesting that Focal Segmental Glomerulosclerosis (FSGS) be listed as a condition eligible for study through the Department of Defense’s Peer- Reviewed Medical Research Program, and encouraging continued research at the National Institutes of Health (NIH) during consideration of fiscal year (FY) 2018 appropriations through important report language.

FSGS is also a leading cause of end-stage renal disease (ESRD), which nearly 30,000 veterans suffer from nationwide. An additional 3,000 veterans are expected to reach ESRD each year with significant disparities among African Americans. In addition, researchers suggest that environmental exposures have yielded new opportunities for investigating FSGS in the military population. More needs to be done to improve our understanding of the impact of FSGS among our military personnel and veterans.

Please consider adding your name to the letter by contacting Lorenzo Rubalcava in Senator Debbie Stabenow’s office at Lorenzo_Rubalcava@stabenow.senate.gov or 4-4822. This letter will close on May 18th, 2017.

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

Sincerely,
[Name]
[Address]

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

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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 24th 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).

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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]

Advocacy Day 2017

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Advocacy Day 2017

NephCure invites all patient families, doctors, researchers, nurses, and everyone else impacted by Nephrotic Syndrome to join us on June 8th and 9th for a day on Capitol Hill. We will be meeting with Representatives, Senators, or Congressional staff to share our stories about Nephrotic Syndrome and kidney disease and to ask for research funding that can help us find better treatment options and cures.

p1130077This is your chance to make sure your voice is heard by legislators. Your story matters, and can help
shape policies that impact millions of Americans. NephCure only hosts this event every 2 years, so don’t miss your chance to share your story with your elected representatives.

If you are interested in attending Advocacy Day with us, please email Chelsey at cfix@nephcure.org or call 610-540-0186 ext 19 for registration and hotel information.

Date: June 8th & 9th
Location: Capitol Hill, Washington D.C.
Who: Everyone impacted by Nephrotic Syndrome
How to attend: Email cfix@nephcure.org for registration and travel information

Can’t make June 8th-9th? There are opportunities to advocate on Capitol Hill with other organizations! The dates and organizations are listed below, and feel free to email us if you would like more information on these events:

National Kidney Foundation: March 6- 7

 

your story matters phrase handwritten on blackboard with heart symbol instead of O

August is Advocacy Month

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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:

  1. 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.
  2. Consider making a local visit as a group, with other patient families from your area or with your friends, family, colleagues, or neighbors.
  3. Review NephCure’s legislative agenda, and ask us any questions you have about the issues by emailing cfix@nephcure.org. 
  4. 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

White House Organ Summit 2016

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The Obama Administration met with numerous companies, foundations, hospitals, universities, and patient advocacy groups at the White House’s Organ Summit on Monday, June 13. The goals of the summit include increasing the number of organ transplants by 2,000 each year, improving patient outcomes, facilitating research and developments around organ donation, and closing the gap between Americans who support organ donation and those who are actually registered organ donors.

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Last year, the United States exceeded 30,000 annual organ transplants for the first time, yet 120,000 Americans are still waiting for an organ donation. Today, twenty-two people will die waiting for a life-saving transplant. President Obama, and several government and non-governmental organizations have made many efforts to reduce the organ donation waitlist, support patients, and increase access to organ transplantation.

Announced on Monday, almost $200 million in investments will be made to facilitate research and development related to organ donation. Specifically the Department of Defense (DOD) in a $160 million public-private investment will create an Advanced Tissue Biofabrication Manufacturing Innovation Institute to develop new manufacturing techniques to repair organ damage by replacing cells and tissues and that can hopefully be used one day to replace entire organs. In similar efforts, the DOD will award small businesses working to advance the science behind preserving organs and tissues.

The donor registration system is being re-imagined to seamlessly and effectively increase registrations and transplants. More than a dozen organizations including Facebook and Twitter are finding new tools and developing campaigns to make registering to be an organ donor easier with the intention of signing up 1 million new donors by fall of 2016.

More than 100,000 people on the organ waiting list are awaiting a kidney transplant so kidney-specific projects were a highlight of Monday’s Summit.

The American Society of Nephrology will partner with the XPRIZE Foundation to encourage the development of a new device solution for patients experiencing end-stage renal disease – an improvement on current dialysis methods. This project aims to overcome the decades of stagnation in kidney disease treatment.

In addition, dozens of transplant centers announced a collaboration to share data and best practices for hard-to-match patients, which could help more than 1,000 people gain access to transplants. Johns Hopkins University is currently working with the National Institute of Allergy and Infectious Disease to create HIV-positive donor pools, which could also lead to as many as 1,000 more transplants per year.

Part of the Organ Summit included the publication of letters written by organ donation recipients. One of which was from NBA player Alonzo Mourning, a kidney transplant patient. Mourning, who lost his kidney due to FSGS, went on to Mourningwin a championship following his transplantation, and today brings awareness to the efforts of the White House and the importance of organ donation registration.

Your Advocacy at Work – New Funding for FSGS Research

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Since 2014, NKI and our dedicated community of patient advocates have been encouraging Congress to include FSGS on the Department of Defense’s list of conditions eligible for research funding through the Peer Reviewed Medical Research Program. Learn more about these efforts here.

Directly as a result of our advocacy, FSGS was included on the list in 2015 and 2016. This new stream of grant funding gives FSGS researchers access to up to $278 million in grant awards. Last year was the first year that FSGS researchers were able to submit grant applications for this new funding stream and recently, the DoD  announced which of those applications were recommended for funding. We are thrilled that five FSGS projects made the list!

FY 2015 Discovery Award

Suzie Pun – University of Washington

FY 2015 Investigator-Initiated Research Award – Partnering PI Option

Ali Gharavi – Columbia University Medical Center

Simone Sanna-Cherchi – Columbia University Medical Center

Suzie Pun – University of Washington

Stuart Shankland – University of Washington

We can’t wait to tell you more about the winning projects for 2015 and look forward to even more success in the 2016 cycle.

In order to ensure that FSGS continues to be included as an eligible condition each year, we must continue to advocate. Stay tuned for more information about what you can do to help!

Our Mission

NephCure Kidney International’s ® mission is to accelerate research for effective treatments for rare forms of Nephrotic Syndrome, and to provide education and support that will improve the lives of those affected by these protein-spilling kidney diseases.

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