Tag Archives: pemphigus

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Preparing for your doctor’s appointment can help you get the most from your visit. Taking an active role in your care will make you an empowered patient. In addition, proactively learning about your disease will improve your healthcare and treatment experience. Collecting the information needed before a doctor’s appointment can ensure that you are organized and strengthen your doctor-patient relationship. Here are ten tips on how to prepare for the visit that will assist you in feeling better when you leave the doctor’s office.

1.      Have all your questions answered. Bring a checklist, and be ready to take notes

2.      Schedule enough time & bring your prescriptions

3.      Address priorities first & clarify concerns

4.      Remember to say “Thank You”

5.      Learn what tests are needed before the visit (if any)

6.      Have copies of your medical records

7.      Get a summary of your visit when you leave

8.      Fill out medical release to get your records

9.      Be patient

10.  Be confident and share your knowledge

Sometimes it is valuable to gain a second, third, or even fourth opinion when seeking a treatment for pemphigus and pemphigoid. Additional opinions also provide an opportunity for you to learn more about your condition and it can offer some peace of mind that you are approaching your disease with the best chance for a favorable outcome.

Remember, if you have questions don’t be afraid to “Ask a Coach” because when you need us we are in your corner!

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H.R. 6, The 21st Century Cures Act of 2015, continues to gain broad support in the United States House of Representatives. The legislation will; increase the development of research through the National Institutes of Health, improve patient-focused drug development, accelerate the approval process for new medical therapies, provide guidance on Precision Medicine, modernize the clinical trial process, expedite patient access, and streamline data and health information.

The IPPF urges you to email the following Congressional Representatives and thank them for their support in co-sponsoring H.R. 6, the 21st Century Cures Act of 2015:

New Cosponsor: Rep. Jim Costa [D-CA16]

New Cosponsor: Rep. Timothy Walz [D-MN1]

New Cosponsor: Rep. Ben Luján [D-NM3]

New Cosponsor: Rep. Christopher Gibson [R-NY19]

New Cosponsor: Rep. Bill Johnson [R-OH6]

New Cosponsor: Rep. Bill Flores [R-TX17]

New Cosponsor: Rep. Julia Brownley [D-CA26]

New Cosponsor: Rep. Lois Frankel [D-FL22]

New Cospo nsor: Rep. Rodney Davis [R-IL13]

New Cosponsor: Rep. Cheri Bustos [D-IL17]

New Cosponsor: Rep. Joseph Kennedy [D-MA4]

New Cosponsor: Rep. Ann Wagner [R-MO2]

New Cosponsor: Rep. Joaquin Castro [D-TX20]

New Cosponsor: Rep. Barbara Lee [D-CA13]

New Cosponsor: Rep. John Sarbanes [D-MD3]

New Cosponsor: Rep. Robert Latta [R-OH5]

New Cosponsor: Rep. Steve Scalise [R-LA1]

New Cosponsor: Rep. Gregg Harper [R-MS3]

New Cosponsor: Rep. Pete Olson [R-TX22]

New Cosponsor: Rep. Adam Kinzinger [R-IL16]

New Cosponsor: Rep. Mike Pompeo [R-KS4]

New Cosponsor: Rep. Chris Collins [R-NY27]

New Cosponsor: Rep. Mimi Walters [R-CA45]

New Cosponsor: Rep. Rick Allen [R-GA12]

Click on the link to go to your Representatives website and contact them. Please use this sample letter to assist in writing your email.

If you have any questions or would like to be more involved in IPPF advocacy, please contact marc@pemphigus.org

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In May 2015, Global Genes launched their 2nd annual Cox Prize for Rare Compassion contest which encourages 1st and 2nd year medical students to get to know a rare family and write an essay based on their experiences. If the medical student does not have a rare family to work with, Global Genes will match them with a rare family in their local area.

In just a few weeks, they have had requests from over 90 medical students for help in being matched with a rare family! These students represent dozens of medical schools all over the U.S. as well as Canada and the U.K.

Global Genes is asking our help in finding rare families we can match for this program. This is a wonderful way to create awareness for your disorder within the medical education community and possibly create a relationship that could shape the med student’s future career focus. The IPPF would love to have pemphigus and pemphigoid families represented in this fantastic program! What a great way to help spread awareness to the future of the medical community about pemphigus and pemphigoid! To let Global Genes know that you are interested in being a rare family for this program please email Carrie Ostrea carrieo@globalgenes.org

Please help us spread the word about their med student matching program by going to http://globalgenes.org/cox-prize-family to see what locations are currently asking for requests. This list gets updated weekly, so please check back often to see what new cities are requested.

Thank you so much for your support! If you have any questions, please do not hesitate to ask.

Carrie Ostrea
Advocacy Director / Parent Advocate
Global Genes – Allies in Rare Disease
http://www.globalgenes.org
(949) 248-RARE x110