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Rare and Orphan Diseases
Critical Path for Alpha-1 Antitrypsin Deficiency
Rare and Orphan Diseases
Pediatrics
Critical Path for Lysosomal Diseases Pre-Consortium
Rare and Orphan Diseases
Pediatrics
Critical Path for Rare Neurodegenerative Diseases
Neuroscience
Rare and Orphan Diseases
Critical Path to Therapeutics for the Ataxias
Neuroscience
Rare and Orphan Diseases
Duchenne Regulatory Science Consortium
Neuroscience
Rare and Orphan Diseases
Pediatrics
Polycystic Kidney Disease Outcomes Consortium
Rare and Orphan Diseases
Pediatrics
Rare Disease Cures Accelerator-Data and Analytics Platform
Rare and Orphan Diseases
Rare Disease Clinical Outcome Assessment Consortium
Core Competencies
Rare and Orphan Diseases
Pediatrics
Clinical Outcome Assessment
Huntington’s Disease Regulatory Science Consortium
Neuroscience
Rare and Orphan Diseases
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Your Experience Can Make a Difference
Name
(Required)
First
Last
Email
Your Relationship with ALS
(Required)
Which best describes your connection to ALS?
Living with ALS
At genetic risk for developing ALS
Former caregiver or care partners of someone with ALS
Friend or family members or someone with ALS
No connection
Prefer not to say
Other
If other, please explain:
What interests you most about participating in a collaborative ALS Research Working Group?
(Required)
Which ALS Research Working Groups(s) are you most interested in?
(Required)
Select All that Apply
Biomarkers & Natural History: understanding disease progression and biological measures of ALS
Clinical Outcome Assessments (COA): Improving how ALS is measured in clinical trials and beyond
COA ALSFRS-R Statistical Analysis group : Standardizing analysis and interpretation of ALSFRS-R
COA Respiratory Function group : Standardizing measures of respiratory function
COA Digital Health Technologies group: Exploring digital tools for ALS research
Data Platform: data sharing, integration, and analysis
Communications: community outreach and dissemination: Lived Experience Working Group
Lived Experience Working Group: Providing ad hoc advisory support to research partners
Unsure, but interested in learning more
Have you previously participated in ALS research before?
(Required)
Yes
No
If yes, please briefly describe
Briefly describe your experience if yes from above
Beyond your lived experience, are there any skills, knowledge, interests, or professional experiences that you believe could be especially valuable to a working group? In the words of one advocate: what are your “superpowers”?
This information will not be used to determine eligibility, but it may help us identify the best fit among available opportunities.
Are you willing and able to commit a few hours per month to working group activities (most months)?
(Required)
Select the appropriate response
Yes
No
Unsure
Is there anything else you would like us to know about you?
Optional
Thank you
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Contact Us
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Message
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Please let us know what's on your mind. Have a question for us? Ask away.
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