LINKS

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Useful Links

The following is a list useful links that I have compiled. If you wish to be added to this list, please send me an e-mail.

Shwachman Diamond Syndrome International

Shwachman-Diamond Syndrome Support International is the premier nonprofit support organization helping the victims of this disease. Their primary goals are to link families for emotional support locally, nationally and internationally, and supply them with the most current medical information available. The information is provided through the knowledge and cooperation of their medical advisory board. They are in the forefront of the fight to find a cure for this disease.  

Article on the Gene Responsible for Shwachman Diamond Syndrome

Sick Kids Hospital in Toronto discovered the gene responsible for Shwachman Diamond Syndrome.

Shwachman Diamond Canada

SDS-Canada is a registered Canadian charity (Registered Charity #86880-8197 RR001) dedicated to raising and awarding funds for much needed research, disseminating information and improving the quality of life for children and adults with SDS.  

Shwachman Diamond Support

Shwachman-Diamond Support (SDS) is a registered UK charity established to offer support and information to sufferers and their families. SDS is a 100% voluntary organisation and funding is solely dependent upon peoples generosity and the fundraising efforts of trustees and parents.

Shwachman Diamond America

SDS-America is a nonprofit organized exclusively for charitable, educational  and scientific purposes.This organization is established to support and encourage research of SDS by providing grants to researchers and educating medical professionals of the need for research in the field of SDS.  SDA educates physicians and families on various aspects of SDS and we also disseminate current medical information on SDS.
 

Cystic Fibrosis Pharmacy

The CF Pharmacy is dedicated to research and development of a new cost-effective pharmaceutical approach to the care and treatment of Cystic Fibrosis. ... Also provides services to SDS patients because of their similiar needs. SDS patients qualify for the AXCAN Scandipharm Weight Gain Shakes and free ADEK'S Multivitamins through special programs.

Axcan Pharmacy : Scandishakes

SCANDISHAKE - Calorie-Rich Shake Mix

SCANDISHAKE calorie-rich shake mix is designed to assist patients who need to gain or maintain weight. A 3-oz serving of SCANDISHAKE powder mixed with 8 oz. of whole milk makes a 600-calorie milk shake. Each 12-oz. box contains four 3-oz. envelopes.

Also, makes SCANDICAL powder to add calories to about anything.

YOUNGLUNG Support Services, INC

A non-profit organization that provides supportive services over the internet, hrough local support groups, and camps designed for teens and young adults living with chronic lung disorders such as asthma and cystic fibrosis or disorders that pre-dispose patients to chronic respiratory infections such as those with Shwachman Diamond Syndrome and other Immune Based Disorders.

Mayo Clinic Transplant Center : Jacksonville

The clinic's new Transplant Center in Suite 1100 of the Joe Adams Building on the St. Luke's campus houses solid-organ transplant services. Candidates for heart, lung, kidney, pancreas or liver transplants are evaluated here, and patients who have had transplants return here for follow-up examinations. The transplants are done at St. Luke's Hospital in operating rooms that are specially set up for the procedures. Afterward, patients are cared for by staff experienced in the needs of patients recovering from transplant surgery.

COTA : Children's Organ Transplant Association

Non-Profit organization that helps young patients and some adults with fundraising to pay for transplant costs.

ISHLT: The International Society for Heart & Lung Transplantation

New Registery of its kind  for Heart and Lung Transplant Information and Statistics.