Rare Disease Day and Rare Disease Week: 2022

We are rare, we are many,
we are strong, we are proud!

The purpose of Rare Disease Day® is to harness the creative energy of the millions of people around the world with rare diseases — and the millions who care about them — to raise awareness and generate action. 

Join the IPPF and get in on the action. Rare Disease Day is the biggest day of the year for rare diseases like pemphigus and pemphigoid. Get involved and make an impact!

As the IPPF community looks to the future, we need to be stronger and louder to make a difference in the lives of people with rare diseases and their families demanding equity and inclusion. Please consider participating in one or more of the activities below and help us continue to spread aware for rare diseases like pemphigus and pemphigoid.

Get Involved:

  • BioNews, will host an excellent panel discussion to explore what it means to be rare.
  • The National Institutes of Health (NIH) is holding a virtual conference with talented panelists and fascinating topics.
  • The National Organization for Rare Disorders (NORD), with it’s zebra-themed mantra “show your stripes,” will host various virtual activities.
  • NORD’s European sister organization, EURORDIS, is urging people to “share your colors” in a global campaign aimed at highlighting the more than 300 million rare disease sufferers in the world.
  • The U.S. Food and Drug Administration (FDA), the agency responsible for reviewing and approving treatments in the U.S., is hosting a virtual public meeting on March 4 in which “various stakeholders will share their perspectives on and experiences in rare disease product development.” Six panel discussions and other activities will be held.
  • Rare Disease Day at IndoUSrare on Monday, 28 February, 2022 from 7:30 pm to 9:30 pm IST, 9 am to 11 am ET invites you to join them for this year’s #rddindousrare, on the theme Celebrating 30 Years of Rare Disease Treatment, in honor of the millions of rare disease patients around the world, 95% who are still without any approved therapy for their condition. Featuring a stellar set of talks and panel discussion, the event commemorates the immense progress the rare disease community has achieved since the first commercial therapy for a rare disease came out in 1992. Register at: https://www.indousrare.org/event/rare-disease-day-at-indousrare-2022/
  • This Rare Disease Day, 28 February, the whole world will be watching the 2022 Global Rare Disease Day event in Dubai and hitting Rare Disease Day events in all parts of the world.
  • GlobalSkin is excited to take part in Rare Disease Day 2022 on February 28, by highlighting and raising awareness for rare dermatological diseases. They have created resources to assist with Members’ social media presence on Rare Disease Day. Visit their website to download materials!

Rare Disease Week on Capitol Hill (2/22- 3/2)

Rare Disease Week 2022

Rare Disease Week on Capitol Hill, organized by the the EveryLife Foundation for Rare Diseases brings together advocates to promote education about federal legislative issues that affect people with rare diseases and their caregivers, as well as public strategies to advocate for further change.

An easy way to spread disease awareness and make an impact is through sharing messages on social media! Raise awareness for the IPPF community and rare diseases by liking and sharing IPPF social media posts or creating your own.