Register with the CASK Coalition

Counting CASK - the global CASK disorders census

Counting CASK is the fastest way to show our potential partners the number of families they can impact. The more individuals with a CASK disorder we can document, the more attractive our rare disease becomes to pharmaceutical companies, biotech firms, research institutions, clinicians, government funding, and donors — all of whom we need to move treatments forward! The CASK Coalition are a worldwide network of families and organisations interested in helping people with a CASK-related disorder live their best lives.
This form is for caregivers of an individual (patient) with a CASK mutation only. Please note: For families with more than one CASK case, please register separately for each patient.
Contact information
Full Name*

First NameLast Name
Spouse or partner's name

First NameLast Name
Country*

Street Address

Street Address Line 2

CityState / Province

Postal / Zip CodeCountry
E-mail*
example@example.com
Patient name*

First NameLast Name
My CASK warrior is*

MaleFemaleN/A
Patient Date of birth*

MonthDayYear
Date
Has the patient been given a named disorder?*

MICPCHXL-ID with or without nystagmusOtherNo / I don't know
What type of mutation does the patient have? (skip question if unknown or unsure)

Deletion of a letter or a section of the CASK geneMissense mutation (when a letter has been switched for another one)DuplicationOther
Has a doctor told you that the mutation on the CASK gene is the reason for your child's problems?*

Yes - the mutation on the CASK gene is definitely causing symptomsNo - we are unsure as to whether my child's problems are due to the mutation on the CASK gene. Something else may be causing it them. It has been classed as a VUS (variant of uncertain significance).I don't knowOther
Address

Street Address

Street Address Line 2

CityState / Province

Postal / Zip Code
Phone Number
Media:

Yes, I'd like to send in photos/videos of our family to help the members of the CASK Coalition advocate for our childrenNo thank you
Volunteering

Yes I would love to hear about how I can help the CASK CoalitionNo thank you
Fundraising

Yes, I'd love to know how to hold a fundraiserI'd love to raise awareness by sharing our work on social media
Confirmation*

I declare the named patient has a diagnosed mutation/alteration in their CASK gene.By submitting this form I agree to the information being stored for purposes of a global patient count and to be contacted by my local member of the CASK Coalition if necessary (for example, if there are research studies requiring patient data or involvement).I understand that the data provided will be stored and processed, in accordance with GDPR by CASK Research (a registered charity) and this information will be anonymised prior to sharing with any external services outside of the CASK Coalition member charities. No identifiable data will be shared without prior consent.
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Counting CASK - the global CASK disorders census