Receiving a cancer diagnosis is one of the most difficult experiences anyone can face. But for rare cancer patients, there’s an additional layer of unknowns, because most doctors may not have much experience with their specific disease. Kristen Palma Poth and Jim Palma, president and executive director of TargetCancer Foundation, share their best advice for newly diagnosed rare cancer patients.
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When Paul Poth received a rare cancer diagnosis at age 37, it kicked off a series of events that would change the course of treatment for countless other patients. Read on to learn why Paul started TargetCancer Foundation and what is the organization’s main mission.
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Joshua Owens, MD, is a genetics resident at Cincinnati Children’s Hospital. Through his work, he encounters families seeking answers to the range of mysterious symptoms and diseases that have genetic origins. Read on to learn about the types of genetic testing that are available today, as well as the benefits and risks of testing.
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As a community advocate for Rare Advocacy Movement, Uni Neha has a passion for guiding others in their rare disease journey. We sat down with Uni to talk about her resiliency routine and to hear her advice for others who are looking for new resources to support their wellbeing.
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Bob Coughlin, who today serves as an advisor to life science companies, was never one for thinking small or limiting his ambitions for rare disease patients. Learn how he and his family overcame the obstacles of cystic fibrosis (CF), raising awareness and money to search for a cure.
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When Wendy White sees gaps in knowledge, she doesn’t wait for others to close them. She steps in and fills them herself. It’s this indomitable spirit and innovative problem-solving that led to her becoming a true changemaker in rare disease.
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Rare 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.
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Read 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.
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The National Alliance for Caregiving is an organization that’s dedicated to improving the quality of life for both caregivers and those in their care. With an emphasis on friend and family caregivers, the NAC aims to advance research, advocacy and innovation in all areas of caregiving.
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The mental health community defines complicated grief as a severe form of mourning that doesn’t resolve with time. In this article, Gina D. Wagner expresses her experience with complicated grief after the loss of her brother who lived with Prader-Willi syndrome along with what she’s learned along the way.
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