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Living with Acromegaly

Living with Acromegaly. Wayne N. Brown Acromegaly Community, Inc. www.AcromegalyCommunity.com. Acromegaly Community Background.

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Living with Acromegaly

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  1. Living with Acromegaly Wayne N. Brown Acromegaly Community, Inc. www.AcromegalyCommunity.com

  2. Acromegaly Community Background • Acromegaly Community became a Not-For-Profit charity in 2010. We are dedicated to the communal sharing of support and information between patients, loved ones, and professionals throughout the medical industry. • It is our mission to provide an emotional and communal network for people touched by Acromegaly. We offer a central location for medical information on issues including surgery, medication, radiation and post diagnosis support. Most importantly, we provide a network of emotional support for Acromegaly patients, their friends, and their family.

  3. Choices, Choices, Choices… Medical Professionals Marketing Pharma Patients And Loved Ones

  4. Where to Find Us Facebook.com/Acromegaly Facebook.com/AcroCommunity Facebook.com/groups/AcroCommunity Pinterest.com/Acromegaly Twitter.com/AcroCommunity

  5. What we do… • Communication: The biggest inhibitor to patient treatment or support is when practitioner and patient or patient and loved one are not effectively communicating. We work to help everyone better understand each other. • Support: Because Acromegaly is such a rare disease, most patients have limited or no support network in their community (family, friends, neighbors). We try to make sure we are filling that gap through services we offer; encouraging all role-players to join our family, atno cost.

  6. Building the Bridge • Independence: There are many options for patients, and our organization believes that our members benefit from our staying independent, enabling us to work with all companies equally. • Act as a bridge: We work as dispassionate coordinators of patient support, working to offer real and intrinsic benefit to pharma, medical organizations like Barrows, patients, and loved ones. When everyone has a seat at the table, only then can meaningful action happen. And when meaningful action is taking place, patients feel less like they are alone, floundering in a morass of nothingness.

  7. Details on our Services • www.AcromegalyCommunity.com: Our website works to balance crucial information with support, in a way that is thorough, easy to navigate, and helpful to all people, from newly diagnosed patients through seasoned veterans. • Website Message Board: Any member can post on our message board. We have recently upgraded our system to be more user-friendly, and to make communication more accessible. In addition, on the message board, members can post questions for medical and psychological professionals on our Board of Directors

  8. National Conference! • It’s About the Community!: We host an annual three-day convention, where people from around the world came together in a show of support for each other, and to collect and share information. (This is currently the only service we provide that requires members to pay. We do give away scholarships for members who cannot afford to attend.)

  9. Support from Home • Conference Calls: We host conference calls, at least once per month, where members can listen in to a live message that is Acromegaly-informational and/or inspirational. When the host has completed their message, callers can participate with the expert hosting the call. • Online Chat Rooms: We offer an online dialogue from time-to-time, hosted by a moderator. Participants get to lead the dialogue with what is most pressing to them. Sometimes medical, sometimes social; always most important to the participants’ lives. Occasionally, members need the opportunity to talk about anything other than the illness, and that is helpful too!

  10. Coming Soon! • On December 3, we will be hosting our first regional meeting. It will be a one-evening version of our national conference • Hosted in Los Angeles, CA at Shanghai Reds • Attendance is free and food will be served • We will have specialists from Cedars Sinai and from St. Johns offering info about Acromegaly, as well as in-person bonding time for patients and loved ones

  11. Contact Information Wayne Brown President Acromegaly Community, Inc. 432 Amherst Street, Second Floor Buffalo, NY 14207 Cell: 716-523-9135 Landline:  716-844-8780 Fax:  716-844-8807

  12. A Special Thanks to our Sponsors Barrow Neurological Institute Corcept Ipsen KARL STORZ Endoskope

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