Tag Archives: medical

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

When you decide to take a trip outside of the state where you live it is a wise idea to make sure that you have enough medications with you to last the length of your trip.

Important information to keep on you while traveling: a medical identification card and insurance card. It is important to have a medical identification card on you to show all pertinent information regarding your condition and all other conditions that you may have. You can purchase blank medical information cards at your local drug store, and fill them out with your medical information (Example Medical Information Card). It is important that you list all of the medication that you are taking to treat your pemphigus, pemphigoid, or any other illnesses to let medical professionals know, so that they don’t put you on any treatments that could counteract what you are currently taking.

If you have a smartphone (iPhone, Android, etc.) that has a health app (example: iPhone Health App) I suggest you fill it out. You can list medical conditions, allergies, medications (name of drug and dosage), doctor(s), emergency contacts, organ donor status, weight, height, and more! Having this information filled out can be very helpful to you at all times, but can be especially helpful during traveling if anything were to happen.

I also suggest that if you are traveling within the U.S. that you keep the IPPF referral list with you. If you are in another state and experience a flare you may need to see a doctor that knows how to treat pemphigus & pemphigoid.  By having the list with you, you can find a potential doctor to help treat you.

Remember, if you have questions to “Ask a Coach” because when you need us we are in your corner!