Patient Resources

The information listed below has been provided by the Alport Syndrome Foundation.

The following list of Internet links is offered as a starting point for information, research, resources and support for kidney patients and families. The lists have been divided in to various categories to make it easier to find the information that is most relevant to you.

  • General Kidney Disease
  • Patient Support & Inspiration
  • Pediatric Support Sites
  • Research/Clinical Trials
  • Dialysis
  • Transplant
  • Other

The Internet is not a substitute for medical advice and you should always consult with your own physician regarding your care and individual needs.

GENERAL KIDNEY DISEASE

Alport Syndrome Foundation
The Alport Syndrome Foundation (ASF) is a volunteer-led organization originally formed by four families affected by this genetic kidney disease. ASF is a 501(c)(3) non-profit corporation that has been built on the past efforts of the late Dr. Curtis Atkin of the University of Utah and the Hereditary Nephritis Foundation. The Alport Syndrome Foundation is also registered with Guidestar, an organization dedicated to providing information on non-profits.

ASF’s MISSION is to educate and support patients and their families that have been affected by Alport Syndrome with the goal of funding research to find more effective treatment protocols and a cure.

Alport Syndrome Foundation Forum
The ASF Forum has been created for Alport families to help and support each other. This Forum provides an avenue for Alport community members to ask questions and draw upon the experiences of other members that have been dealing with Alport syndrome (https://www.alportsyndrome.org/forum.html).

American Association of Kidney Patients
The AAKP site is focused on education and improving the health and well-being of chronic kidney disease patients. Specifically, this site addresses issues related to hemodialysis, peritoneal dialysis, and transplant recipients. The site contains many brochures and magazines that are especially relevant for newly diagnosed patients.

American Kidney Fund
The American Kidney Fund is a source of direct financial assistance to kidney patients, and is a leader in providing education to those with and at risk for kidney disease.

American Society for Nephrology
The American Society of Nephrology is focuses on scientific and educational goals to enhance the field of nephrology. The organization is a good source for current scientific knowledge and clinical practice related to kidney disease.

Kidney School
Kidney School is a site that provides interactive, web-based learning programs to help people learn what they need to know and understand about kidney disease.

Life Options
Life Options provides a wide variety of educational materials related to kidney disease and information about current kidney research.

National Kidney Foundation
The National Kidney Foundation is a comprehensive site providing information and resources, including:

  • Patient and Family Education
  • Kidney Learning System
  • Information on kidney donors and recipients
  • Meetings and events
  • Bulletin Board for patients
  • Brochures on treatment, dialysis, hypertension, transplant, exercise, nutrition, polycystic kidney disease (PKD)

Kidney and Urologic Disease Information Clearinghouse
The National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC) is an information dissemination service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The NIDDK is part of the National Institutes of Health (NIH), which is part of the U.S. Department of Health and Human Services. NKUDIC was established in 1987 to increase knowledge and understanding about diseases of the kidneys and urologic system among people with these conditions and their families, health care professionals, and the general public.

Nephrology "The Best of the Web"



PATIENT SUPPORT & INSPIRATION

Alport Syndrome Foundation Forum
has been created for Alport families to help and support each other. This Forum provides an avenue for Alport community members to ask questions and draw upon the experiences of other members that have been dealing with Alport syndrome (https://www.alportsyndrome.org/forum.html).

Renal Support Network
The Renal Support Network is an organization that provides non-medical services to those affected by chronic kidney disease. 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 their disease.

John F. Martin Website
This site chronicles a photojournalist's journey from diagnosis of Alport syndrome through dialysis and transplant. The site contains many graphic photos of medical procedures and it is not suitable for all ages.

Shad Ireland Website
An inspirational site about the first known dialysis patient to compete in an Iron Man Triathlon.

PEDIATRIC SUPPORT SITES

American Society of Pediatric Nephrology
The American Society of Pediatric Nephrologists is a site aimed at physician members, but also has a section for patient information and key Internet links that is quite useful.

Kidtrans.org
A place for donor families to receive support and information specifically related to children having kidney transplants.

RESEARCH/CLINICAL TRIALS

Clinicaltrials.gov is a registry of federally and privately supported clinical trials conducted in the United States and around the world. ClinicalTrials.gov gives you information about a trial's purpose, who may participate, locations, and phone numbers for more details.

PubMed is a service of the U.S. National Library of Medicine that includes millions of citations from MEDLINE and other scientific journals for biomedical articles. This site has valuable information on past and current research and includes links to the full text articles and other related resources.

DIALYSIS

Forum of ESRD Networks
This is a site dedicated to support and advocacy on behalf of the Medicare's ESRD Networks.

Home Dialysis Central
Home Dialysis Central is a one-stop, online source of up-to-date, unbiased information about home dialysis-in all its forms-for people with kidney disease, their families, and the healthcare professionals who provide kidney disease care.

RenalWeb
A site covering a variety of topics relevant to dialysis patients, including a discussion board, links to medical journals, and relevant legislation.

TRANSPLANT

Donate Life America
Donate Life America is a not-for-profit alliance of national organizations and local coalitions across the United States dedicated to inspiring all people to save and enhance lives through organ, eye and tissue donation.

National Foundation for Transplants
The National Foundation for Transplants is dedicated to helping patients overcome financial hurdles in receiving a life-saving transplant, and the follow up treatment and medications essential to their continued health.

Transplant Living
Transplant Living is a project of the United Network for Organ Sharing (UNOS), a nonprofit organization that maintains the national Organ Procurement and Transplantation Network (OPTN) under contract with the Health Resources and Services Administration of the U.S. Department of Health and Human Services. A Pediatric section is provided.

United Network for Organ Sharing
The United Network for Organ Sharing is the leader in the field of transplantation data and research. Their mission is to advance organ availability and transplantation by uniting and supporting its communities for the benefit of patients through education, technology and policy development.

OTHER

Genetic Alliance
Genetic Alliance increases the capacity of genetic advocacy organizations to achieve their missions and leverages the voices of millions of individuals and families living with genetic conditions.

Genetic Testing

Genetic testing information can be found on the Gene Tests website: http://www.ncbi.nlm.nih.gov/sites/GeneTests/review/disease/alport?d...ts&search_param=contains.

National Organization of Rare Diseases
The National Organization for Rare Disorders (NORD), a 501(c) 3 organization, 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.

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