President and CEO of the National MPS Society. Working to provide hope and support to families for treatment and cures of MPS and ML. https://xitter.cf/t.co/rVZEotEtPQ
Raleigh, North Carolina
Joined August 2009
- Tweets461
- Following230
- Followers294
- Likes746
Thank you @RepMeijer for sharing Rare Disease Day with our Families. Speaking to you was inspiring! Michigan is lucky to have an engaged Rep! @MPSSociety #savelives #RareDiseaseDay #advocate – at Durham, NC
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It is wonderful to advocate with fellow parents for our children! It is Rare Disease Day 2022. – at Durham, NC
Thank you @RepJackBergman for listening to our constituents on Rare Disease Day. It meant a great deal to us all. You really understand. #cures #RareDiseaseDay @terrilklein #michiganisamazing
Congratulations @SusanRKahn one of the most wonderful patient advocates! Well-deserved. – at Durham, NC
Sue Kahn, Executive Director of the National Tay-Sachs & Allied Diseases Association (NTSAD) to receive 2022 Patient Advocate Leader (PAL) Award at WORLDSymposium 2022 #WORLDSymposia #RareDiseases #careaboutrare tinyurl.com/byjuharx
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Terri Klein retweeted
A 38-year-old Florida man who was the first US Capitol rioter convicted of a felony has been sentenced to eight months in prison
cnn.it/2UqoEjC
Join us in policy action!! – at Holly Springs, NC
Support the bipartisan STAT Act (Speeding Therapy Access Today) of 2021, H.B. 1730 / S. 670. This will improve access to safe and effective treatments ASAP, crucial for MPS/ML. Read more and contact legislators with an automated form: bit.ly/3qGVJSn.
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Terri Klein retweeted
Discussion #nbsbootcamp "A Look Inside the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC)".
Terri Klein retweeted
September is Newborn Screening Month! Don't miss @MPSSociety President and CEO Terri Klein at the @EveryLifeOrg Newborn Screening Bootcamp starting September 30th. It's a five-part series to help educate and empower NBS advocates. Register today: nbsbootcamp.org
Check out Jenny's Joggers' team fundraising page - support.mpssocietygive.org/t… – at Holly Springs, NC
#You inspire so many@SamHeughan with your foundation work, #AskSamHeughan Who/What inspires you? – at Holly Springs, NC
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Last day on the Hill visiting Senator Burrs office. Newborn Screening Act, Appropriations lan lg. for CT and NHS, go advocates #RareDC2020 @MPSSociety @SenatorBurr
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Our time @mpssociety on Capitol Hill, the RDLA Legislative Conference. Networking with Foundations, and preparing for the ask at Hill visits #RareDC2020 – at Washington, DC
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Thank you @SenThomTillis office and Garrett Daniel, Health Policy Fellow. North Carolina has Centers of Excellence for our patients with MPS and ML. And my daughter Jennifer Klein, Patient Scientist is grateful to be working in Raleigh among the vast biotech environment. – at Washington, DC
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Save the Nation's Newborn Screening Advisory Committee congressweb.com/nord/29?fram… – at Washington, DC
#NORDSummit opening with the Town Hall Panel including Peter Marks and Janet Woodcock from the FDA. Gene therapies, machine learning and more ..what they are learning @MPSSociety – at Washington, DC
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One day in #NORDSummit, had some fantastic meetings. Always good to discuss gene therapy with Mark Rothera @orchard_tx @MPSSociety
NORD Summit has begun. Listening to Patient Caregiver Heroes! @MPSSociety @RareDiseases #NORD – at Washington, DC
Soar to your potential Jennifer Klein, Scientist. Chasing her Cure. Write, be bold, be true, and take a seat at the table. ourodyssey.org/featured-blog… – at Holly Springs, NC
Terri Klein retweeted
Excited to collaborate with fellow researchers to advance what we know about the role of #inflammation in health and disease? Apply to our new RFA now bit.ly/2kGxWpQ
Terri Klein retweeted
This a reminder that submissions for the MDBR 2019 pilot grants are due next Monday, September 23 by 8pmET! Share with your friends to remind them!
ow.ly/Jttx50wijxz
At the #2019GGSummit watching Sharon King and Dr. Steven Gray, on Turning Hope into Action @taylorstale #raredisease
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