Melissa Hogan, the founder of Saving Case & Friends, is a lawyer by profession, a writer by passion, and an advocate by necessity.
She frequently speaks about issues in the rare disease space, discussing topics such as advocacy, social media, patient engagement, clinical trials, and special education. She receives extraordinary reviews from audiences varying from patient families to pharma executives to health care organizations.
Her blog began in 2011 as SavingCase and is read in over 100 countries. She also updates on her son Case’s participation in the first clinical trial for cognitive impairment in MPS II, a rare lysosomal storage disorder, and uses other social media strategies such as Twitter, Pinterest, Facebook, YouTube, and LinkedIn.
Melissa holds a J.D., magna cum laude, with an emphasis in health law from the University of Pittsburgh School of Law where she served as Executive Editor of the Law Review and graduated Order of the Coif.
She is a former law clerk to the now Chief Judge of the U.S. Court of Appeals for the Sixth Circuit and previously practiced as a corporate and securities attorney at a well respected law firm in Nashville, Tennessee. She has also taught legal writing and health care regulatory law. Most recently, she practiced as a management consultant with KermaPartners, advising law firms and legal networks on global strategy.
She is also the author of the e-book Calmer: Medical Events with Cognitively Impaired Children (2012) which shares strategies for preventing medical trauma in children with chronic medical conditions.
Her most recent speaking engagements include:
- National Institutes of Health, Rockville, MD: Development of Pediatric Ports for Intrathecal Medication Delivery Meeting (speaker)
- Food and Drug Administration, Silver Spring, MD: Public Workshop on Assessment of Neurocognitive Outcomes in Inborn Errors of Metabolism and Advancing the Development of Pediatric Therapeutics (speaker, view webcast, agenda, and slides here)
- Food and Drug Administration, Silver Spring, MD: Patient-Focused Drug Development Workshop on Neurologic Manifestations of Inborn Errors of Metabolism (panelist, view webcast here)
- Food and Drug Administration, Silver Spring, MD: Immune Responses to Enzyme Replacement Therapies: Role of Immune Tolerance Induction (panelist)
- Global Genes Patient Advocacy Summit, Newport Beach, CA: Conversations with the Experts – Social Media (view here)
- A global pharmaceutical company: Rare Disease, A Caregiver’s Perspective
- Social Media Summit (#mayoragan), Rochester, MN: Rare Disease & Social Media
- Innovative Approaches to Address the Needs of Ultra-Orphan Patient Populations, St. Louis, MO: Panel speaker (agenda)
- National MPS Society Family Conference, Boston, MA: Power in Numbers: A Workshop on MPS-Specific IEPs
- World Orphan Drug Congress, Washington, DC: Opening speaker – Patient testimony (watch here)
- World Orphan Drug Congress, Washington, DC: Social Media & Rare Disease (Siren Interactive workshop) (watch a portion here)
- MPS Family Meeting, Cincinnati, OH: A Heart for Holland: Advocating in Education, Health Care, and Clinical Trials
- National MPS Society Family Conference, St. Louis, MO: Clinical Trials: One Family’s Experience
- Shire HGT Internal Conference, Palm Beach, FL: This is Case
She is experienced and available to speak about:
- a caregiver’s perspective on rare disease
- advocacy generally as well as,
- advocacy in education (initial and ongoing IEPs, overcoming objections, ten tips in educational advocacy)
- advocacy in health care (managing your child’s chronic illness, patient rights)
- advocacy in social services (obtaining Medicaid, waivers, SSI, additional services)
- participation in clinical trials
- the impact of chronic illness and rare disease on families
- nontraditional legal careers
- hope in adversity
Contact Melissa if you want to inquire about a speaking engagement.
Another recent speaking engagement:
2013: Conversation with the Experts: Melissa Hogan, Social Media from Global Genes | RARE Project on Vimeo.