Nathanael Milam: Key Headlines with Keystones, Shaping the Future of Rare Disease Advocacy
Nathanael Milam, RDLA Intern at EveryLife Foundation for Rare Diseases, shared on LinkedIn:
“Key Headlines with Keystones: Shaping the Future of Rare Disease Advocacy (8/19-8/23)
Happy Friday!
Key Headlines with Keystones is back, spotlighting transformative moments and extraordinary advocates in the rare disease community.
Each week, we’ll share the latest news and inspiring stories driving progress in our field.
This week, we’re celebrating:
Social Security Administration Expansion: Histiocytic disorders are now on the Compassionate Allowances list, meaning faster claims processing and improved support.
Learn more about this expansion and upcoming episodes of the Beyond the Diagnosis podcast, brought to you by the Histiocytosis Association.
More info here.
National Patient Advocacy Day: We’ve been featured!
Check out the impact we have when we all come together. Thank you, OncoDaily! Rare Disease Week 2024.
Discover more.
Ana G’s Research: At Cincinnati Children’s Hospital, Ana G’s research on respiratory tract development is making significant strides in gene function understanding, inspiring the medical research community.
Global Genes Week in RARE 2024: Kansas City is hosting a week of education and networking with events like the RARE Advocacy Summit and Health Equity Forum. Get details here.
Sachin Rawat’s Article: Sachin highlights gaps in genomic research and the need for diverse representation to advance precision medicine. Read more here.
National Organization for Rare Disorders Educational Series: The series ‘Rare Disease Drug Development: What Patients and Advocates Need to Know’ empowers groups to be proactive and create natural history studies.
Learn more.
Katelyn Laws: Celebrating her leadership at the EveryLife Foundation for Rare Diseases and wishing her success in her new role at the Alzheimer’s Association. Katelyn’s mentorship has greatly impacted our community.
Darlene Shelton: Honoring Darlene’s dedication to Hemophilia B advocacy, leading to legislative changes and improved emergency care. See her feature.
Ready for a challenge? Test your knowledge on rare diseases and advocacy with our Kahoot quiz by August 30! Play Now.
P.S. Celebrate these outstanding individuals by visiting their profiles and showing support. Your encouragement makes a difference!”
Source: Nathanael Milam/LinkedIn