In this episode, Kimberly discusses various awareness months and initiatives in the global rare community, beginning with a recap of International Ataxia Awareness Day and a message from Alan Thomas, a rare disease advocate, emphasizing the importance of collaboration and amplifying the rare disease voice.
We highlight awareness months in September, including International Autoinflammatory Awareness Month, Spinal Muscular Atrophy Awareness Month, Craniofacial Acceptance Month, International Hypothalamic Hamartoma Awareness Month, Leukodystrophy Awareness Month, National Immune Thrombocytopenic Purpura (ITP) Awareness Month, Newborn Screening Month, Pulmonary Fibrosis Awareness Month, STXBP1 Awareness Month, and Thyroid Cancer Awareness Month. The podcast also covers news related to rare diseases, such as investments in rare disease research, personal experiences of patients, updates in disability assistance, and medical advancements like early Alzheimer's diagnosis.
Resource Links:
- Awareness Days Calendar
- https://autoinflammatorymonth.org/
- alexTLC The Leukodystrophy Charity - Light Up Blue
- EP22 with Dr. Nicholas Garnier
- Pulmonary Fibrosis Awareness Month
- STXBP1 Awareness Month
- Thyroid Cancer NHS Connect
- How to subscribe to a Dazzle4Rare calendar page
- Article about Josiah and Makenzie Cabrera
- NCBRS 5k Virtual Run
- NCBRS Scientific Advisory Board LinkedIn
- CRDN RareSumitt2023
- PIP Disability assistance changes UK
- Youngest Alzheimer's Case
- CRISPR gene editing for EU crops (Nature article)
- EU proposal on CRISPR-edited crops is welcome — but not enough (article reprint)
- CNN AI article
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