Dent Disease


New York City Patient Meeting Details

Meeting Location

NYU Langone Medical Center
550 First Avenue, Yellow Pathway
New York, NY 10016

Hotels

These are a few hotels located near NYU Medical Center. A group or special RKSC rate is not available.

  • Affinia Dumont
  • (2 blocks from hospital/all suites)
    150 East 34th Street
    (Between Third and Lexington Avenue)
    (866) 233-4642
    Request NYU Corporate Rate

  • Park South
  • 122 East 28th Street
    (Lexington & Park)
    212-448-0888
    Request NYU Corporate Rate

  • Ramada Inn Eastside
  • 161 Lexington Avenue
    (At the corner of 30th Street)
    212-545-1800

  • Affinia Shelburne
  • 303 Lexington Avenue
    (Between 37th and 38th Street)
    (212) 689-5200
    Request NYU Corporate Rate

For More Information Contact:
Cathy Forrest
Dent Disease Patient Advocacy Group




Focus Group

John C. Lieske, MD (Principal Investigator) | bio | Mayo Clinic, Rochester, MN

Lada Beara Lasic, MD, MS (Co-Investigator) | NYU Medical School, Department of Nephrology, NY

Barbara M Seide (Study Coordinator) | Mayo Clinic, Rochester, MN

Julie Olson, RN (Study Coordinator) | Mayo Clinic, Rochester, MN

Alicia Meek (Study Coordinator) | Mayo Clinic, Rochester, MN

 

Contact information:

Mailing address for records/paperwork:

Mayo Clinic
200 First Street SW
Rochester, MN 55905
Dent Disease Program Ei-SL 33

Email: rarekidneystones@mayo.edu
Phone: 800-270-4637
Fax: 507-255-0770

 

What's New?

New Patient Advocay Group (PAG) for Dent Disease patients and families being formed! It is exciting that Catherine and Austin Forrest are in the process of starting this patient group! They have a web page started and all interested patients, family members, physicians, researchers are invited to participate! Check out the new website under development: http://dentdisease.com/

New diagnostic algorithms

The RKSC investigators collaboration has published a new article that also includes updated diagnostic algorithms for the four rare kidney stone diseases in the RKSC, including a Dent algorithm: Edvardsson V, Goldfarb DS, Lieske JC, Beara-Lasic L, Anglani L. Milliner DS, and Palsson R. Hereditary Causes of Kidney Stones and Chronic Kidney Disease. Ped Neph 2013.
Article link: http://rd.springer.com/article/10.1007/s00467-012-2329-z

 

How Can I Participate?


1. Join the Dent Disease Registry!
The Registry is one of the easiest ways for patients to help and the Registry is also one of our most important tools to learn more about Dent disease. We encourage all Dent disease patients to join the Dent Registry. Recently our Registry enrolled its 100th patient!

• For more information on this study contact the RKSC Study Coordinators at:

email or call 800-270-4637

2. Sign up for the Patient Contact Registry on the Rare Diseases Clinical Research Network (RDCRN) site. RKSC will be posting news and updates on the RDCRN site. RDCRN will also be updating patient information on this site and patients are encouraged join the RDCRN Contact Registry to stay informed about upcoming news:

http://rarediseasesnetwork.epi.usf.edu/RKSC/register/index.htm

3. Support the Dent Disease Patient Advocacy Group.

http://dentdisease.com

4. Participate in other research studies of Dent Disease: Contact the Study Coordinators and they will assist you in signing up for the studies that are open for enrollment:

email or call 800-270-4637

Social Media sites for Dent Disease

Facebook: http://www.facebook.com/DentDisease

Rare Share: http://rareshare.org/communities/dent-s-disease

Advocacy Organization

Dent Disease http://dentdisease.com/

Helpful links

Dent disease on Gene Review http://www.ncbi.nlm.nih.gov/books/NBK99494/

Disease Information

Disease Information for Patients

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