Rare Disease Week on Capitol Hill
Feb
25
8:00 AM08:00

Rare Disease Week on Capitol Hill

RARE DISEASE WEEK ON CAPITOL HILL 2019

We are excited to welcome rare disease advocates from across the country to Rare Disease Week on Capitol Hill 2019 in Washington, DC from February 24 to February 28, 2019! The travel stipend application is open from now until December 14, 2018. You can find out more about the travel stipend program here.

Registration for Rare Disease Week on Capitol Hill 2019 will begin on January 3, 2019!

To find out about past Rare Disease Weeks on Capitol Hill, click the links to the right for archived materials and videos from our 2018 events.  If you’re just finding out about Rare Disease Week and RDLA, sign up for our email list and follow our Twitter and Facebook accounts for the latest information.

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California Rare Disease Day
Feb
28
8:00 AM08:00

California Rare Disease Day

Rare Disease Day 2019. Lobbying and raising awareness at the Califonria Capitol.

Check calrare.org for more information.

CAL RARE is dedicated to improving the lives of rare disease patients in California. We are a coalition of rare disease stakeholders with a goal to raise awareness among the general public and decision makers regarding rare diseases. We want to bring recognition to the issues rare disease patients face and work to ensure access to physicians, treatments, and social services.  

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ASPEN - Webinar - The Use and Operationalization of Standardized Commercially-Available Parenteral Nutrition (SCAPN) During PN Shortages
Dec
11
2:30 PM14:30

ASPEN - Webinar - The Use and Operationalization of Standardized Commercially-Available Parenteral Nutrition (SCAPN) During PN Shortages

Event Type: Webinars

Parenteral nutrition component shortages are frequent and concerning to the nutrition support practitioner given the limited availability of therapeutic alternatives. Fortunately, during the last decade, several standardized commercially-available parenteral nutrition (SCAPN) products have entered the market. This presentation will cover the types of products available for use in the United States and the evidence regarding use of these products and patient populations to consider during shortages. The presentation will also describe the experience of operationalizing SCAPN in a rapid manner in a large, academic institution, highlighting "things to remember" when implementing use of these products with prescribing and electronic prescribing. The faculty will take a practical approach to presenting this information through the utilization of case presentations. 

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Duke Meeting on Drug Shortages
Nov
27
6:00 AM06:00

Duke Meeting on Drug Shortages

Identifying the Root Causes of Drug Shortages and Finding Enduring Solutions 

Drug shortages complicate patient care and lead to adverse clinical consequences. They directly affect treatment options and require practitioners to make difficult decisions that can compromise care, such as rationing supplies or using less desirable, but more readily available, alternative therapies. The purpose of this meeting—convened in cooperation with the U.S. Food & Drug Administration—is to give stakeholders including health care providers, patients, manufacturers, wholesalers, pharmacists, pharmacy benefit managers, veterinarians, public and private insurers, academic researchers, and the public, the opportunity to provide input on the underlying systemic causes of drug shortages and to make recommendations for actions to prevent or mitigate drug shortages.

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ASPEN - Colorado Chapter Conference
Nov
9
7:30 AM07:30

ASPEN - Colorado Chapter Conference

November 09, 2018,  7:30 AM - 4:30 PM 

Event Type: A.S.P.E.N. Chapter Meetings

The Colorado Society for Parenteral and Enteral Nutrition (CSPEN) 2019 Presents:
Nutrition Support Symposium 2018

Bruce Shroffel Conference Center
University of Colorado Hospital
12605 E 16th Avenue
Aurora, CO 80045

CE's available for Dietitians, Nurses, Pharmacists, and Physicians.

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ASPEN Webinar - Cancer and the Ketogenic Diet
Nov
7
3:00 PM15:00

ASPEN Webinar - Cancer and the Ketogenic Diet

Event Type: Webinars

Many individuals diagnosed with cancer seek to modify their diet as an adjunct to their treatment. One new diet that has gained popularity in some oncology patient populations is the ketogenic diet. This program will provide a thorough review of the literature and evidence on the beneficial effects of ketogenic diet in oncology. Information will be provided on the nutritional goals of the various therapeutic ketogenic diets for oncology patients as well as the implementation and management of the ketogenic diet. 

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Nutrishare Neighborhood Call
Nov
6
4:00 PM16:00

Nutrishare Neighborhood Call

The Nutrishare Neighborhood conference that we like to refer to as a get together with Nutrishare’s home TPN consumers, caregivers, and friends.  Each month we will start off the conversation with a special guest, who will share with us helpful and interesting parenteral nutrition information or an opinion that others may expand upon.  If we get off topic that is perfectly ok –

It’s your Neighborhood!

November, 6 2018

Handling Holiday Eating – Consumer Perspectives

Carol-Ireton Jones, Ph.D., RDN, CNSC, FASPEN 

All calls will be at the same time each month. 4:00 PM Pacific time, 6:00PM Central time and 7:00 PM Eastern time. Check with Linda Gravenstein for details  lgravenstein@nutrishare.com

Have an idea you would like us to talk about?

Email Linda –  lgravenstein@nutrishare.com

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Oley Regional Conference
Oct
6
12:00 AM00:00

Oley Regional Conference

Along with our Oley Foundation Annual Consumer/Clinician Conference, the Oley Foundation holds one-day FREE regional conferences throughout the United States in order to share the latest information, advocacy, and research. The conferences are coordinated for consumers and family members/caregivers but all others are encouraged to attend and learn! Below you will find upcoming meetings with information and registrations links. We hope you can make one!

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Nutrishare Neighborhood Call
Oct
2
4:00 PM16:00

Nutrishare Neighborhood Call

The Nutrishare Neighborhood conference that we like to refer to as a get together with Nutrishare’s home TPN consumers, caregivers, and friends.  Each month we will start off the conversation with a special guest, who will share with us helpful and interesting parenteral nutrition information or an opinion that others may expand upon.  If we get off topic that is perfectly ok –

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