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Helen Walker
@helenmwalker44
National Myotonic Dystrophy, FSHD & SMA Patient Registries Manager (she/her)
*Views my own*
#neuromuscular #PatientRegistries #dm1 #dm2 #fshd #RareDisease
ID:1062751819015819264
https://jwmdrc.org/ 14-11-2018 16:59:13
522 Tweets
669 Followers
1,4K Following
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๐ฌ Want to kickstart a research project on your #raredisease ? The #Share4Rare 4th ๐๐ฎ๐น๐น๐ฐ๐ฃ๐ฟ๐ผ๐ท๐ฒ๐ฐ๐๐ is here to help you and your organisation make it happen.
More information here ๐ share4rare.org/news/4th-shareโฆ
Send your proposal before July 15th!
![Share4Rare (@Share4Rare) on Twitter photo 2024-04-11 09:01:56 ๐ฌ Want to kickstart a research project on your #raredisease? The #Share4Rare 4th ๐๐ฎ๐น๐น๐ฐ๐ฃ๐ฟ๐ผ๐ท๐ฒ๐ฐ๐๐ is here to help you and your organisation make it happen. More information here ๐ share4rare.org/news/4th-shareโฆ Send your proposal before July 15th! ๐ฌ Want to kickstart a research project on your #raredisease? The #Share4Rare 4th ๐๐ฎ๐น๐น๐ฐ๐ฃ๐ฟ๐ผ๐ท๐ฒ๐ฐ๐๐ is here to help you and your organisation make it happen. More information here ๐ share4rare.org/news/4th-shareโฆ Send your proposal before July 15th!](https://pbs.twimg.com/media/GK312GhXEAAjN1g.jpg)
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Calling patient group leaders! ๐ข
Beacon is looking to team up with Genetic Alliance UK to design specialised training for rare disease patient groups.
With a general election coming up, would you be interested in free policy, advocacy and campaign training?
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Excellent talk from AnnemiekeAartsma-Rus on lessons the #MyotonicDystrophy research community can learn from DMD, including the importance of natural history and patient data. See how UK DM Patient Registry can support this goal by viewing poster 54, or get in touch for a chat ๐งฌ #IDMC14
![Helen Walker (@helenmwalker44) on Twitter photo 2024-04-09 17:01:11 Excellent talk from @oligogirl on lessons the #MyotonicDystrophy research community can learn from DMD, including the importance of natural history and patient data. See how UK DM Patient Registry can support this goal by viewing poster 54, or get in touch for a chat ๐งฌ #IDMC14 Excellent talk from @oligogirl on lessons the #MyotonicDystrophy research community can learn from DMD, including the importance of natural history and patient data. See how UK DM Patient Registry can support this goal by viewing poster 54, or get in touch for a chat ๐งฌ #IDMC14](https://pbs.twimg.com/media/GKvQWseXkAAep-H.jpg)
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UK #MyotonicDystrophy Patient Registry Participants should have received an email last week inviting you to participate in a survey for Peter. If you don't see the email in your inbox, pls check your junk folder then contact [email protected] ๐ป
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It's #NeurodiversityCelebrationWeek ๐
Join us in celebrating the fact that Great Minds Don't Think Alike!
Every brain is unique and has a way of #ThinkingDifferently .
#GreatMinds #NeurodiversityWeek #NCW #ThisisND
![The Brain Charity (@TheBrainCharity) on Twitter photo 2024-03-18 08:30:17 It's #NeurodiversityCelebrationWeek ๐ Join us in celebrating the fact that Great Minds Don't Think Alike! Every brain is unique and has a way of #ThinkingDifferently. #GreatMinds #NeurodiversityWeek #NCW #ThisisND It's #NeurodiversityCelebrationWeek ๐ Join us in celebrating the fact that Great Minds Don't Think Alike! Every brain is unique and has a way of #ThinkingDifferently. #GreatMinds #NeurodiversityWeek #NCW #ThisisND](https://pbs.twimg.com/media/GI8IaeqWwAA4wL2.jpg)