I am the face of intracranial hypertension.

Join Me on the Wall of Hope For Rare Disease Day!

Here's how to join from the Intracranial Hypertension Research Foundation (IHRF):

Intracranial hypertension (IH) is an invisible disorder; people with IH often look fine, on the outside, but are, in fact, suffering terribly. It also is an illness that can strike anyone. The Foundation originally created the Wall of Hope on IHRF’s Facebook page in 2011 as part of the effort to raise public awareness of intracranial

hypertension and rare diseases for Rare Disease Day. It proved so popular that we are once again opening the Wall of Hope for your pictures for Rare Disease Day- February 28, 2013. Please join us in this grass-roots campaign to literally give IH and rare diseases a face—yours!

Are you on Facebook?

From February 15-28, we are asking you to take a picture of yourself to submit to the Wall of Hope. You have two options…

Option 1. You can download this IH RDD Awareness flyer and take a picture of yourself holding the flyer. There are two different flyers- one for patients and one for family members and friends.

IH RDD Flyer for Patients IH RDD Flyer for Family and Friends

(If you are using the Family and Friend flyer, a space has been left for you to add your family or friend relationship, i.e. “My mom is the face of intracranial hypertension.”)

Option 2: If you do not want to use the flyer, then we are asking you to take a picture of yourself and add these additional words:

I am the face of intracranial hypertension (IH). Rare Disease Day, February 28, 2013 http://www.ihrfoundation.org rarediseaseday.org

If you are a friend or family member of someone with IH, you can use the following:

My (family member/friend) is the face of intracranial hypertension (IH). Rare Disease Day, February 28, 2013 http://www.ihrfoundation.org rarediseaseday.org

You can add words to photos in most photo-editing programs, including Picasa which is free software from Google.

After you take the picture, please send your photo as an attachment to ihrfsubmit@gmail.com. We will be posting the photos to our Facebook page, so we can create a Wall of Hope album. We also hope that you will use it for your profile photo during February 2013 as a way to continue to spread awareness.

Thanks for your help in raising awareness of IH, rare diseases and Rare Disease Day!

Please note: IHRF reserves the right to select or reject any picture submitted to the Wall of Hope. To be considered for the Wall of Hope, pictures must include EITHER the IH RDD Awareness flyer OR the alternative “I am (My family/friend is) the Face of Intracranial Hypertension/Rare Disease Day/www.ihrfoundation.org/rarediseaseday.org” lines.

Pictures missing this information or containing any other information will not be accepted. When you submit a picture to the Wall of Hope, you grant IHRF permission to use your Wall of Hope photo in any Foundation-related marketing, educational or fundraising campaign or material.

#rarediseaseday #IH #intracranialhypertension