Sean Gordon

Patient Leader

The RareFundingTeam Story Breaking Barriers RareFundingTeam is dedicated to helping people with rare diseases realize their hopes and dreams through improving their patient organizations. The site is focused on matching rare disease organizations with professionals who volunteer their time assisting them on a project or short-term basis. ​ Several years ago, actually at birth, I became a patient of a rare disease, although the impact would not be felt for decades to come. The disease is called Adult Polyglucosan Body Disease, and is neurological. And as the name suggests, the disease affects adults – in our case starting in the late 40’s to early 50’s. ​ From birth until I was about 50 I lived a life without knowing I had a rare disease. In fact, while I had heard that there were people with rare diseases I thought, they were, well rare. And probably like you, I was unaware the problem was as massive as it is. Through my illness I have become personally involved in the rare community and was shocked to learn the extent of the problem. Individuals with rare diseases often belong to the hundreds of patient organizations worldwide. The goals of the organizations are to ease the suffering of the patients, fund and in many cases direct early stage research in search of cures, fund-raise and engage in government and private sector advocacy. In many cases, these organizations are small, poorly staffed and under-funded, often run by volunteers – many of whom are friends/relatives of a patient. THEY HAVE A CRITICAL NEED TO PARTNER WITH PROFESSIONALS TO HELP THEM IN THE AREAS OF MARKETING COMMUNICATIONS, GRAPHICS, IT, MANAGEMENT, LAW, ETC. ​ By creating this site I am utilizing 25 years of marketing, sales and management experience in international high tech in order to help my fellow rare disease patients have a better life. ​

Location

Jerusalem, 06

Nominations

Advocating for Another Rookie of the Year

He has quickly got up to speed with understanding a variety of rare disease in general and already helping people individually. Giving his time and expertise to patients and their family and friends.  — Louis

Sean Gordon

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