Will You Join Us on Rare Disease Day 2022?
Rare Disease Day on Feb. 28 is a critical day, although every day is Rare Disease Day when you are living with or caring for someone who has one.
The experience is often isolating and lonely, but on this special day, we are all urged to come together as one.
Rare diseases don’t respect geography, and as members of the rare disease community, we are spread out to all corners of the world, with several organizations vying for our attention on this upcoming day. However, we must figure out how to remain united rather than retreating to our own devices when Rare Disease Day has come and gone.
As Rare Disease Day approaches, the message is being sent out from many places urging us to throw on some zebra stripes and share our stories. My Twitter feed is blowing up with opportunities for patients, caregivers, and advocates to get out there and fight for rare disease.
With about 7,000 rare diseases affecting some 30 million people in the U.S. alone, that’s the equivalent of about one in 10 of us. There is no shortage of people to go to battle, and there should be no lack of people to do the advocacy we need to expand research, increase levels of care, approve new therapeutics, and provide access for every patient who wants or needs treatment.
All of this had me wondering where I fit in. Where can I make the biggest impact? I asked myself. And then I thought that if I was wondering about this, others likely were, too.
Following are some of the Rare Disease Day activities I will be paying attention to:
BioNews, the parent company of this website, 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 Week on Capitol Hill, organized by the EveryLife Foundation and scheduled for Feb. 22 to March 2, will bring 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.
Creating safe spaces
I am out there nearly every day looking for advocacy events and helping to shine a spotlight on patient needs. Yet I am also aware that the most important detail is right in front of me: my son, Brady, who was diagnosed in 2009 with erythropoietic protoporphyria.
I crave creating a safe space for my teenage rare disease warrior. He needs his mom’s care, his dad’s hugs, the banter with his brothers, tug of war with his puppy, and the highs and lows of being a typical teenager. He needs to feel safe within his own space, and the tools to help him be brave while being “one in 10.”
The aching I feel in my bones for a safe space for him extends to every person living with porphyria, and every family living with any other rare disease. It motivates me to venture off to organize or participate in another event! This year, I helped organize NIH Rare Disease Day events, and I will listen in and be inspired by the folks participating in the FDA panel discussions as well. I’ll make room for lobbying efforts on Capitol Hill, then head home for a hug from my rare disease North Star.
Please put on your zebra stripes and join me in whatever way you feel comfortable — which may just be in the comfort of a hug from your own warrior.
Note: Porphyria News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Porphyria News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to porphyria.