February was Rare Disease Month, and February 29th was the 15th annual World Rare Disease Day, which occurs on the last day of February each year. This is Pennfield’s first year of participating in our Care for Rare initiative, which aligns with our school’s overarching mission and commitment to Diversity, Equity, Inclusion, and Belonging.
Increased rare disease awareness is absolutely critical to creating stronger systems of identification, treatment, and support for those impacted. Through thoughtful curiosity, enhanced understanding, and joyful acceptance, rare disease families experience an increased sense of belonging in their community. We look forward to continuing to meaningfully connect with our community’s rare disease families in the years to come!
“Inclusion isn’t enough because it’s just the start of the journey. To feel included is not the same as to feel a sense of belonging.” – Alida Miranda Wolff
Fast Facts from the National Organization for Rare Diseases (NORD)
- Any disease, disorder, illness, or condition affecting fewer than 200,000 people in the United States is considered rare.
- Most rare diseases are genetic or have a genetic component. No individual or family is immune from a rare disease.
- 1 in 10 Americans have a rare disease. That is more than 30 million of our loved ones, friends, colleagues and neighbors.
- It is estimated that 15 million children in the U.S. have a rare disease and sadly, 30% will not live to see their fifth birthday.
- There are more than 10,000 known rare diseases and fewer than 5% have an FDA-approved treatment.
Here are some easy ways YOUR family can “CARE for RARE”
➼ Talk openly at home about any challenges others may be facing to encourage tolerance, compassion, and active curiosity about diversity at every level. Most families affected by rare diseases (or disability, neurodiversity, or other special circumstances) welcome the chance to answer questions and provide context or insight into their everyday lives. But they also probably would love to talk about connections too, and not focus solely on their different-ness. It can sometimes feel hard to know what to say or anticipate how to offer “just right” support – but starting with building connections and offering kindness goes a long way!
➼ Introduce adversity and compassion by reading topical books together or providing exposure so that health/genetic diversity and disability are not foreign to your own family’s experience – here are some great examples across ages and there are a number of great movies and shows, too!
➼ Support businesses and organizations who are working on behalf of rare disease and/or disability advocacy. This could be as simple as cheering on an advocate or asking questions about their work and passions if you are curious. One local option is to grab a bag of Jackson’s Chips products (available locally at Green Grocer, A-Market) and share the Reamer Family’s story with your kids as you snack. Jackson passed away in 2017 from complications related to Aicardi-Goutieres Syndrome (AGS), which also affects the Cordova Family at Pennfield. A portion of this co’s proceeds continually supports rare disease philanthropy through both their foundation and the AGS Advocacy Association, the global organization dedicated to fighting this disease which is led by Pennfield Parent, Devon Cordova. Other ideas could be grabbing a meal at Shayna’s Place in Wickford, or supporting the Four Hearts Foundation as they work to build an inclusive playground in Portsmouth. If you have other ideas or opportunities to share, please let a DEIB team member know!
➼ Reach out to families you know who are impacted by a rare and/or debilitating disease and may benefit from your support and friendship or in-kind professional assistance. Offering a helping hand, providing a good laugh, sharing a meal, planning a play date, or helping with fundraising or advocacy goals can go a long way. Just a friendly smile or hello can also really help to brighten someone’s day.
➼ Share what you learn about rare disease advocacy and awareness. Most affected families aspire to keep their lives as “normal” as possible despite constant obstacles and do not wish to solicit pity. If more people can understand what having a rare disease means, the easier it becomes for families to integrate more successfully in their communities and advocate together.
➼ #CHOOSEKIND – help your children to understand what this means by regularly offering tangible examples to show how you and others #choosekind too!