National Kidney Foundation
30 East 33rd St.New York, NY 10016
Phone: (800) 622-9010
Website: http://www.kidney.org/
E-mail: info@kidney.org
The NKF offers many services for patients and their families, including education, emergency assistance, and a kidney early evaluation screening program.
Renal Support Network
1311 N. Maryland AvenueGlendale, CA 91207
(818)543-0896 Phone
(818)244-9540 Fax
Website: http://www.rsnhope.org/
E-mail: info@renalsupportnetwork.org
The Renal Support Network (RSN) is a nonprofit, patient-focused, patient-run organization established in 1993 to provide non-medical services to those affected by chronic kidney disease (CKD). RSN strives to help patients develop their personal coping skills, special talents, and employability by educating and empowering them (and their family members) to take control of the course and management of the disease. A vital role of RSN is to provide lawmakers and policymakers with the patients’ perspective on the needs and capabilities of people with CKD.
The American Kidney Fund
Helpline: 1-800-638-82991-866-300-2900 (spanish)
Website: http://www.akfinc.org/
E-mail: helpline@kidneyfund.org
The American Kidney Fund was founded in 1971 and has since become the nation's leading non-governmental source of direct financial assistance for needy kidney patients. Each year, AKF helps thousands of dialysis and transplant patients pay for treatment necessities.
Lifeoptions Rehabilitation Program
Life Options is actively engaged in research, partnering with other organizations, offering technical support, and developing high-quality, research-based educational materials for kidney patients and renal professionals.The Lifeoptions program has an interactive, web-based learning program in 20-minute modules called Kidney School. It was designed to help people learn what they need to know to understand kidney disease and its treatment, adjust to kidney disease, make good medical choices, and live as fully as possible. You decide which modules to visit and when--so what you learn is entirely up to you.
National Kidney and Urologic Diseases Clearinghouse (NKUDIC)
3 Information WayBethesda, MD 20892-3580
Phone: 1-800-891-5390
Website: http://www.kidney.niddk.nih.gov/
E-mail: nkudic@info.niddk.nih.gov
Connects to patient organizations, government agencies, and the National Kidney Disease Education Program.
American Association of Kidney Patients
3505 E. Frontage Rd., Ste. 315Tampa, FL 33607-1796
Phone: 1-800-749-2257
Website: http://www.aakp.org/
E-mail: info@aakp.org
The AAKP is the only national kidney patient organization directed by kidney patients for kidney patients. Services include a patient magazine, an online newsletter, and patient support and education.
The Nephcure Foundation
15 Waterloo Avenue, Suite 200Berwyn, PA 19312
Phone: 610-540-0186
Website: http://www.nephcure.org/
E-mail: info@nephcure.org
The NephCure Foundation is the only organization solely committed to seeking a cause and cure for two potentially devastating kidney conditions, Nephrotic Syndrome and Focal Segmental Glomerulosclerosis (FSGS). NephCure is made up of patients, their families and friends, researchers, physicians and other healthcare professionals joining forces to create awareness and generate funding for research.
The Vasculitis Foundation
P.O. Box 28660Kansas City, MO 64188-8660
Phone: 1-800-277-9474
Website: http://www.vasculitisfoundation.org/
E-mail: vf@vasculitisfoundation.org
The Vasculitis Foundation (VF, formerly the Wegener's Granulomatosis Association) was established to alleviate the isolation hat patients and their families experience when these rare life-threatening diseases affect them. They provide support, awareness, and research for all types of vasculitis.
WegenersNet.org
Website: http://www.wegenersnet.org/WegenersNet is a community where people affected by Wegeners Granulomatosis can interact with each other for support and learn more about this disease. This website includes a discussion board and current news items about Wegeners and related topics.
The PKD Foundation
9221 Ward Parkway, Suite 400Kansas City, MO 64114-3367
Phone: 1-800-PKD-CURE
Fax: 816-931-8655
Website: http://www.pkdcure.org/
E-mail: pkdcure@pkdcure.org
The Polycystic Kidney Disease (PKD) Foundation works to advance research into the causes and treatments of PKD. The PKD Foundation has member organizations in many cities that help increase public awareness of PKD, organize fundraising activities, and Assist patients and their family members by encouraging, providing support and listening.
Amyloidosis Support Network
1490 Herndon LaneMarietta, GA 30062
Phone: 1-800-689-1238
Website: http://amyloidosis.org/
E-mail: info@amyloidosis.org
The mission and primary functions of the Amyloidosis Support Network is to provide the means to "help link those affected by amyloidosis to support resources" and encourage awareness among the public and professionals so that the disease can be recognized earlier and appropriately treated.
The National Organization for Rare Disorders (NORD)
55 Kenosia AvenuePO Box 1968
Danbury, CT 06813-1968
Phone: (203) 744-0100
Tollfree: (800) 999-6673 (voicemail only)
Website: http://www.rarediseases.org/
E-mail: orphan@rarediseases.org
The National Organization for Rare Disorders (NORD), is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
Lupus Foundation of America, Inc.
National Office
2000 L Street, N.W., Suite 710
Washington, DC
20036
Phone: 202-349-1155 (8:30 a.m. - 5 p.m. Eastern Time Monday -
Friday)
Fax: 202-349-1156
1-800-558-0121 (Information request
line)
1-800-558-0231 (Para información en Español)
Website: http://www.lupus.org/
General email address: info@lupus.org
With more than
200 chapters, branches and support groups in 30 states, the Lupus
Foundation of America (LFA) is the nation's leading non-profit voluntary
health organization dedicated to finding the causes and cure for lupus.
Our mission is to improve the diagnosis and treatment of lupus, support
individuals and families affected by the disease, increase awareness of
lupus among health professionals and the public, and find the causes and
cure. Research, education, and patient services are at the heart of
LFA's programs.DxLupus.orgThis website was made specifically for
patients and family members who want to learn more about Lupus, and
includes patient stories, information on health-related issues, physical
and emotional needs, family and social relationships, and general
information on Lupus, including an animated videoWebsite: http://www.dxlupus.org/
For even more links, Click HERE
Central Coordinating Office:
Glomerular Disease Collaborative Network (GDCN)
7024 Burnett-Womack Bldg
Chapel Hill, NC 27599-7155
E-Mail: gdcnunc@med.unc.edu
