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CCFA Resources: Support During Hurricane Sandy November 5, 2012.

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Presentation on theme: "CCFA Resources: Support During Hurricane Sandy November 5, 2012."— Presentation transcript:

1 CCFA Resources: Support During Hurricane Sandy November 5, 2012

2 Our goal during recovery from Hurricane Sandy Educate constituents, volunteers, and staff about CCFA’s efforts to support them during recovery. Ensure constituents have knowledge about where to find IBD resources and state recovery/relief resources. Provide timely response to all constituents and volunteers.

3 Practical Matters: Water IBD patients need to stay hydrated. Water is the best source of hydration. If living in impacted areas, remember: –Drink bottled water, if available. –Boil water for at least one minute, if water source is contaminated or if you are unsure of the safety of your water. Let water cool, then use. –Do not eat any food that has come in contact with flood or contaminated water. Check the status of your water supply by contacting city and state government – Health & Human Services.

4 Practical Matters: Food Keep refrigerator doors closed during power outages. –Food in the refrigerator will keep for four hours. –Food in freezer will keep 48 hours. –Discard any food that has been above 40 degrees for more than two hours. Use coolers to keep food cold beyond four hours; pack food tightly together to keep food longer. Use dry ice or frozen gel packs. Do not use any food that has been exposed to fire or floodwaters. When in doubt, throw it out!

5 Practical Matters: Medications Pills: Do not use if exposed to floodwaters or fire. Refrigerated Solutions: Do not use if exposed to temperatures above 40 degrees for more than two hours. Biologic Products: –Do not use if exposed to floodwaters. –Call the FDA with questions about specific products and lack of refrigeration: Monday to Friday, 9:00 – 5:00: 1-800-835-4709. After business hours: 301-796-8240. –These questions will be forwarded to the appropriate center or office for advice.

6 Federal Emergency Management Agency If you need assistance from FEMA for repairs, flood damage, etc. Register at: You can also call -1-800-621-FEMA.

7 CCFA is here to help and support…

8 Information Resource Center (IRC) IRC Specialists are here to serve you! Specialists can answer IBD questions and help constituents find relief programs such as: – Medication assistance programs – Ostomy supply programs – Answer questions about medication storage during power outages Reach the IRC at: or call

9 CCFA Chapters – Here to support you! CCFA chapters are open. Staff are working and available to our constituents. Don’t know your local chapter? – Visit CCFA: – E-mail the IRC at: IRC can provide phone, email, and the names of chapter staff to help.

10 Support Programs Web-based Live Phone/Skype

11 Support Programs: Web-based ProgramWeb Address – www.Type of Web-based support CCFA Community Website ccfacommunity.orgOnline community for patients and caregivers – share stories, resources, coping techniques Community: Online Support Group, 90-minute, professionally moderated support group Campus dedicated to college age students

12 Online Support Group – Open Sessions! New session added in response to Hurricane Sandy! Registration now open! Sign up today for one of two available upcoming sessions: –Tuesdays from 8:30-10:00pm ET in November/December on 11/20, 11/27, 12/4, and 12/11 –Sundays from 7:00-8:30pm ET in December on 12/2, 12/9, 12/16, and 12/23 Learn more and register today at:

13 Support Programs – Live/Phone/Skype ProgramWeb Address – www.Type of Web-based support Chapter Support Groups colitis/find-a-support-group/ Live, in-person support groups, 5 to 15 people, over 250 groups available across the US Power of, Email, or Skype- based support, peer-to- peer

14 Local Education Programs

15 Mid-Atlantic Region: North Carolina Saturday, November 10 th Treatment Approaches in IBD: Options to Consider Charlotte, NC Register: 704-264-0587 ext. 1 or Saturday, November 17 th Nutrition and IBD: Choices for Adults & Kids Greensboro, NC Register 704-264-0587 ext. 3 or

16 Mid-Atlantic Region: Philadelphia Chapter Thursday, November 8 th Understanding Inflammatory Bowel Disease Harrisburg, Pennsylvania 215-396-9100 x4 Saturday, December 8, 2012 St. Christopher’s Family Education Day Philadelphia, Pennsylvania 215-396-9100 x4

17 Southeast Region: Tennessee Chapter Saturday, November 10 th The Road to a Healthier Life with Crohn's Disease & Ulcerative Colitis – Patient Education 866-814-CCFA x3 to register

18 New York Region New York City: Sunday, November 11 th Continuing Medical Education: Best Practices in IBD (For physicians only!) Beth Israel Medical Center: Philips Ambulatory Center Auditorium 10 Union Square East 646-388-9290 or Long Island: Tuesday, November 13 th A.S.K (Answers, Support, Knowledge) – Patient Education Rockville Center 516-222-5530 or

19 Great Lakes Region: Indiana Chapter Saturday, November 10 th IBD Patient Education Conference 317-259-8071 California Region: Los Angeles Saturday, November 10 th Nutrition and IBD: Choices for Adults & Kids Santa Clarita 310-478-4500

20 Upcoming National Teleconferences

21 Register Today for this FREE Program: BREAKTHROUGHS IN IBD RESEARCH Teleconference/Webcast Thursday, November 15 th at 8:00 PM ET Presented by James Lewis, MD Advanced program covering the latest in microbiome research and recent clinical trials

22 Save the Date! It’s Up to YOU: Decisions & IBD Management –Thursday, December 5 th at 2:30 PM ET –Presented by David Schwartz, MD –Will provide an update on: Risks & benefits of treatment Advocating for optimal care Working with your healthcare team to decide on the best approach Registration coming soon!

23 CCFA is here to help! Contact the Information Resource Center (IRC) or your local chapter for: Support Education Resources

24 Thank You!

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