February 29 is the rarest day on the calendar. This year, I invite you to do something meaningful to mark the day.
On the last day of February, millions of people from around the world will observe Rare Disease Day® by organizing events and activities that raise awareness for patients, families, and caregivers affected by rare diseases.
Because you, and we as your advocates, are directly connected to a rare disease, this is a perfect opportunity for us to raise awareness for pemphigus and pemphigoid which affect roughy 1 in 1,000,000 people. Pemphigus and pemphigoid are just two of the 7,000 known rare diseases that in total affect 30 million – or 1 in 10 – Americans, making them not so rare after all.
We know first-hand the difficulties families have getting access to life-saving, life-improving medical treatment or other services due to insurance obstacles or to a lack of knowledge about pemphigus and pemphigoid by the medical community. This challenge is common to all rare diseases.
What is Rare Disease Day®?
Rare Disease Day® began in Europe in 2008, and is now in its eighth year in the U.S. under the sponsorship of NORD. In 2015, all five continents and 80+ countries participated. Through social media, there has been even greater awareness and participation.
This year’s theme “Patient Voice” recognizes the crucial role that patients play in voicing their needs and in instigating change that improves their lives and the lives of their families and caregivers. The 2016 slogan “Join us in making the voice of rare diseases heard” appeals to a broader audience who may not be living with or directly affected by a rare disease, and to join the rare disease community in making known the impact of rare diseases. People living with a rare disease and their families are often isolated. The wider community can help to bring them out of this isolation.
Some rare diseases (such as most types of cancer and Lou Gehrig’s disease, or ALS) are well known to the public. Many others, like pemphigus and pemphigoid, are not. I am sure many of you can empathize with millions of others who have a disease most people have never heard of, for which there is treatment, or one even being studied in clinical researchers. Thankfully, pemphigus and pemphigoid are being actively researched with new treatments being added to the list of clinical trials each year. But for others this is not always the case.
How Can You Raise Awareness?
Raising public awareness truly makes a difference. It gives families hope and can lead to new, life-saving treatments. You can help by participating in any of the following ways:
- Handprints Across America. Print a flyer, take a picture, and post to your social media accounts.
- Attend a State House Event. If you’re near your state capitol, join others in educating elected officials.
- High School Biology Curriculum Supplement on Rare Diseases. Help high school students understand rare diseases.
- Social Media. Join the conversation on social media and use the official, global hashtag for 2016, #RareDiseaseDay.
I encourage everyone in our closeknit community to get involved by visiting the U.S. (www.rarediseaseday.us) or global (www.rarediseaseday.org) Rare Disease Day website before February 29 to learn about events in your area and what you can do.