Lymphangiomatosis & Gorham's Disease Alliance Forum / Odds & Ends / Word of the Week

Multidisciplinary

Jack Kelly — Wed, 09 Jul 2008 07:19:57 GMT

Multidisciplinary approach

A major action or undertaking ensuring the contribution of several specialized disciplines, and the coordination at all levels between and among the participants for the benefit of comprehensive treatment in difficult and less common cases.

Because Gorham's disease & lymphangiomatosis are known to have the potential to affect multiple organs and systems of the body, treatment at a center where multi-specialists are available must be given serious consideration. For example, a musculoskeletal tumor specialist, bone pathologist or orthopedic surgeon may be needed where there is bone involvement; if located in the skull or spine then a neurosurgeon can be brought onto the case; if presentation is in the chest, a pulmonologist, pulmonary pathologist or thoracic surgeon may be required. Notable consideration should also be given in determining what other resources are available in pediatrics, hematology, oncology, radiology, endocrinology, neurology, gastroenterology, cardiology, and general surgery which may be needed to be part of the evaluation, assessment, treatment, and ongoing management of the patient's condition.

Consult regularly with your doctors and identify the specialists you will need for your multidisciplinary team, and be the facilitator for collaboration with your local medical team.

Importance of the Orphan Drug Act

Jack Kelly — Sat, 28 Jun 2008 21:01:12 GMT

In this time of the 25th anniversary of the enactment of the Orphan Drug Act, it is well to read of some of the important impact this legislation has made on behalf of the rare disease community. This progress has been made possible by the dedication and persistence of the N.O.R.D (National Organization of Rare Disorders) team - blazing a trail for us. Check out the link below. And, write to your government legislators whether you are in America, within the EU, or anywhere around the world to tell them how much we depend on important initiatives such as the Orphan Drug Act.

http://online.wsj.com/article/SB121417838559995535.html?mod=dist_smartbrief

A Purpose of the LGD Alliance

Jack Kelly — Sat, 14 Jun 2008 12:51:28 GMT

Patient Support

. . . .working to ease the difficulties encountered by patients & families in accessing disease-specific medical expertise, support, and services as they begin to address the reality of dealing with a rare- orphan disease. Helping to mount the battle against an unknown enemy.

A Key

Jack Kelly — Fri, 30 May 2008 09:25:23 GMT

The key to the rare disease is often the key to the common one. The key to the closet is often the key to the kingdom.

Fred Kaplan MD The Key to the Closet is the Key to the Kingdom: A Common Lesson of Rare Diseases July 2006