In our family, the love is infinite and the joy is absolute. In many ways we are like any other family; however, as we navigate this decision to have another biological child, the math is painfully different. I feel overwhelmed by uncertainty, the possibility of genetic errors, and the fragility of life.
Read MoreRare advocates, such as Nadia Bodkin, are shining a light on racial and ethnic inequities in healthcare systems. Learn how Rare Advocacy Movement (RAM), co-founded by Bodkin, and the rare disease community are fighting to make care more equitable for all.
Read MoreDefying the odds, Amy never thought she’d be able to have children. Her pregnancy was high-risk due to her own medical issues. However, she made it through her first trimester of pregnancy and was ready for an ultrasound at 18 weeks. Amy didn’t expect the doctors at her local hospital to tell her that her daughter would never walk or talk.
Read MoreLearn about Mind-Body Interventions (MBI) and how they can help with FSGS symptoms.
Read MoreDiscover the benefits of yoga and how it can help with FSGS symptoms, and find out how to get started with a yoga practice.
Read MoreThe Genesis Foundation for Children is a non-profit organization that provides wraparound care for children born with rare diseases and genetic disorders. Learn more about their impact and the programs that they fund.
Read MoreLike many rare diseases, Focal Segmental Glomerulosclerosis (FSGS) is full of surprises, but the main one often occurs at diagnosis. Read how Johnathan, Karen, and Talanda dealt with their unforeseen diagnosis and learned how to live with FSGS.
Read MoreCaring for a chronically ill child can be emotionally perilous. As a rare parent, Laura knows that sorrow naturally slips into moments of joy. By practicing and sharing gratitude, Laura gains control and eases those moments of fear and grief. Discover the power of gratitude and learn how the act of giving thanks transformed the way Laura experiences her husband, her children, and her day-to-day life.
Read MoreHow can we advance knowledge research for a rare disease when there are so few patients? One important way is through a patient registry. Learn more about what a patient registry is and why should people with a rare disease join one.
Read MoreA recent New York Times article discusses the inexactness of prenatal testing and how false positives about genetic markers of rare disease can cause anxiety. Read genetic counselor Elizabeth Kearney’s response, where she expertly addresses the inaccuracies and assumptions made in the article.
Read MoreThe PMG Awareness Organization is a nonprofit organization of families, caregivers, and medical professionals that support those with Polymicrogyria and raise awareness of this rare disease. Learn more about their goals and upcoming events.
Read MoreAs we welcome 2022, Laura Will chooses self-compassion as her New Year’s resolution. She delves into the description of the three key elements to self-compassion, revealing its many benefits. Instead of using self-critical thoughts to guide another transient resolution, Laura invites us to honor our imperfect and emotional selves, to practice self-kindness, and to channel some caring energy inwards.
Read MoreRare Patient Voice is a market research company that connects patients and caregivers with opportunities to share their opinions with researchers and companies developing medical products, treatments, and services.
Read MoreThe Alagille Syndrome Alliance is an international nonprofit that strives to create a loving and supportive community for all ALGS Warriors. Learn more about their mission and the several goals that they aspire to achieve.
Read MoreLearn more about the National Society of Genetic Counselors (NSGC), an association which promotes the professional interests of genetic counselors and offers a network for professional communications. Access the full article to read about their mission, vision, and history.
Read MoreRead about the importance of supporting employees who are also rare disease caregivers. Gina D. Wagner argues that employers must address their needs and implement significant changes in the workplace, and offers five ways organizations can create a balance between work and life for these caregivers.
Read MoreThe Center for the treatment of Pediatric Neurodegenerative Disease strives to centralize care for children afflicted with these rare, chronic, and debilitating diseases. The Center includes a multidisciplinary team of physicians and other healthcare providers offering comprehensive services to aid in the diagnosis, management, and social support of children and their families suffering from neurodegenerative diseases.
Read MoreAfter her infant son was diagnosed with a rare brain malformation, Laura had an identity crisis. She was no longer just-a-mom, but also a family caregiver. Although this newly acquired title may be emotional and exhausting at times, Laura discovered in herself unforeseen skills and a remarkable strength. She delves into the description of the four states of a caregiver’s identity and creates a beautiful metaphor for this extraordinary role.
Read MoreWhile I can not trust the future health of my child, I have found things I can trust: his doctors, his one-to-one aid, my partner, the coffee maker, laughter, and my desire to care for my son. Naming the things we trust can offer some sense of control. With that trust, the fear is held at bay; and, if we pay attention, hopeful little moments start unfolding before us.
Read MoreRare Resiliency is a monthly column written and/or curated by Laura Will. This column explores the concepts and skills that play a protective role against chronic and acute stress. Each article challenges and encourages the reader to continue to develop that inner steadying strength as they face illness and uncertainty, sorrow and joy.
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