FOR ALL THE BIG AND LITTLE THINGS THAT OUR RARE DISEASE COMMUNITY DOES ON A DAILY BASIS - WE HONOR YOU!
In the week leading up to World Rare Disease Day, February 28, 2021, we want to acknowledge our member community for the many things that they do to support our BPAN family members. While COVID has amplified the burdens of all households, the daily management and support of our BPAN children and many in our rare disease community, has and continues to be an area that exacts a tremendous emotional, financial, physical and spiritual toll on our rare disease caregivers and families.
Their often herculean efforts to provide in-home support, healthcare management, and ongoing educational support, while often juggling everyday household responsibilities, caring for siblings and extended family members and maintaining employment - comes at a great cost to self-care and personal physical and mental health and interpersonal relationships.
We recognize all that our rare disease community does daily. We KNOW the challenges, we FEEL how isolating the rare journey may be and we SEE how many rise to the occasion - not because we have a choice, and not because we see our actions as heroic, rather because, it is what we do, as rare parents, as rare caregivers and as a rare disease community.
We honor our "BPAN HEROES", our caregivers, our family members, and our extended community, not just this week, however every day. Thank you for your RARE COURAGE.
Check back with us daily to learn more about this year's honorees and why we are so grateful!