Personal Medical Consultant | Keynote Speaker | Making unlikely things happen
Joined January 2016
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This week I'm on the CBS News podcast #UnsungScience! David @Pogue has authored or coauthored over 100 books & he helps me tell the story of the dog surgery that gave me back my life! Take a listen!!!!! #RareDisease #spoonie unsungscience.com/the-podcas…
Ten Rare Disease Facts from Doug Lindsay,
Co-Chair of PCORI’s Rare Disease Advisory Panel (2020-2022) & CNN’s Top Health Story of 2019:
1. 25 million Americans have a rare disease
2. There are over 7,000 known rare diseases
3. More remain unidentified
4. 95% have no treatment
5. Disease is rare if under 200k Americans have it.
6. Average time to diagnosis: 7 years
7. Average number of doctors seen: 8
8. Time until all 7,000 have a treatment: 2,000 more years.
9. US Govt recognizes 6 health disparity groups; rare disease not 1.
10. Director of NIMHD & ARHQ Director, together, could change by naming Rare Disease a "Health Disparity Population." #RareDiseaseDay2023 #RareDiseaseDay #RareDC2023 #rarediseaseawareness
Doug Lindsay retweeted
#RareDisease is a community 25 million strong in the US. Together, we are a COMMUNITY. We must be recognized as a "Health Disparity Group" or we will continue to suffer needlessly & invisibly! #equity #SDoH #RareDiseaseDay health-hats.com/pod159/
Biggest lesson to MDs on #RareDisease Diagnosis: "Rare" doesn't mean "Never." If smart docs struggle, throw up a flag🚩This might be a rare disease! health-hats.com/pod159/
Great piece in the @NYTHealth on #LongCOVID. A strong summary & overview, plus links & resources to people & sources generally respected in the #postviral, #MECFS & Long COVID worlds! nytimes.com/interactive/2022…
Doug Lindsay retweeted
Love how @Doug_Lind_Say saved himself and now helps other people solve their own mysteries. That's some potent #PeerHealthAdvice - lending people the courage to try people.com/human-interest/ma…
Doug Lindsay retweeted
Today is my 1st day working on a project funded by @theNCI.
The best part is, the study is focused on a condition I am living with.
1st order of business:
Re-writing the entire aims page so other patients like me can better understand what the study is about.
#patientresearcher
Amber Freed has raised millions for a gene therapy for her son.
people.com/human-interest/tr…
And Shandra Trantham is researching treatments for her difficult rare disease.
people.com/health/24-year-ol…
Thank you to @people magazine for putting a spotlight on the rare disease community and how we all try to balance hope with a sometimes bleak reality. Their article about my health journey has been trending on several news streams since yesterday - reaching lots of new people.
Now, millions more Americans will learn that there are 25 million #RareDisease sufferers in our nation & in our own communities.
What a way to close out the year!!! @people Magazine shares a online piece on my medical odyssey & my work helping rare & complex patients! #raredisease #healthcare #mecfs #dysautonomia #pinksocks #hcldr #peoplemag people.com/human-interest/ma…
Reminds me of what I read about Rhode Island hospital before they committed to a healthy hospital culture instead of a fear box. God bless and good luck, @KDRichardson924
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