Get Ready For Rare Disease Day!

By Kimberly Smith, PHA Intern

February 28^th is Rare Disease Day and it’s time to celebrate! Rare Disease Day was established in 2008 by EURODIS (Rare Disease Europe) and its Council of National Alliances, and is celebrated annually on the last day of February. Rare Disease Day was created to raise awareness and advocate for rare diseases that many people are unaware of, but that so many in the world are affected by. Events are held in countries throughout the world, from here in the United States to Spain, Japan, and everywhere in between! Many people use this day as an opportunity to raise their voices about rare disease and go to their local politicians and advocate, and events are happening at State Houses across the country, sponsored by the National Organization for Rare Disorders (NORD).

The Global Genes Project, a non-profit organization dedicated to rare and genetic diseases, is also celebrating Rare Disease Day with various events and activities dedicated to raising awareness. Their “Wear That You Care” campaign allows participants to order, for a small donation, a “Genes Ribbon” to wear along with their favorite pair of jeans to show their support and raise awareness for rare and genetic diseases. Click to learn more about the Global Genes Project and their Rare Disease Day events.

There are so many ways you can celebrate Rare Disease Day! Here’s a few ways some members of the PHA Community celebrated last year:

• Last year on Rare Disease Day Colleen went in for a haircut and decided to donate 12 inches of her hair to Locks of Love! She had planned on donating it sometime in the future, and after a little encouragement from her hairdresser, she decided it would be a great way to mark the day.  
• Rachel made cupcakes with names of rare diseases on them to celebrate last year. Delicious!

How will you celebrate Rare Disease Day this year? Visit www.rarediseaseday.org to find events happening near you! 

Day of Love!

By Kiara Tatum

It’s Valentine’s Day and everyone, whether you are anti-Valentine’s Day or pro Valentine’s Day, will be celebrating somehow.  This can be hard time for those with PH and single because it’s not so easy to feel free to love someone when you are coping with PH.  And those who are in a relationship may not have enough money to afford a gift for their love one.  PH is a rather expensive illness to treat.  So have three tips for the singles and for the couples.

Single Phriends:

1. Go out with your single friends.  Maybe go bowling or catch a movie together.  Celebrate being single with other singles.
2. Stay home with your family.  Sometimes going out on Valentine’s Day is too much because there is red hearts, roses and chocolate everywhere you turn.  So just hang out with family or invite some single friends over to spend time with them.
3. Take a chance and go out on a blind date.  Use those newest dating apps and find someone who’s single and meet up.  You never know, the day of Love can be a great day to find your true match.

Valentine’s on a Budget:

1. Have a picnic dinner indoors.  Make a wonderful dinner for you and your love one.  Spread out that picnic blanket on the floor and sit on the blanket and share a cooked meal together.
2. Write a love poem or love letter to that special someone.  Sharing your thoughts and feelings this special day will make that someone special fall in love all over again with you.
3. Take your love one to McDonald’s.  Seriously, I hear that McDonald’s is setting up Valentine’s Day seating with candlelight dinners.  That’s sure to fit into anyone’s budget this Valentine’s Day.

These are just some of my thoughts to share with the singles and the couples this Valentine’s Day. You can find other ideas all over the Internet. Everyone have a wonderful day full of love from friends and family.