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Charity Details

 

ROHHAD Association

SC045645Registered charity from 28 May 2015
2MB ZIP file, with green, blue and mono style logos
2MB ZIP file, with green, blue and mono style logos
Information about this charity:
Charity Information Operations Annual Submissions Income and Expenditure Charity Trustees
Charity Information:
Address 11A Lomond Crescent
Alexandria
Postcode G83 0RJ
Website www.rohhadassociation.com
Regulatory Type Standard
Object:
The organisations purposes are: The Saving of Lives by funding and promoting research that will lead to new understanding and treatments, and brings us closer to a cure for the rare medical condition ROHHAD The advancement of health by funding and promoting research that will lead to new understanding and treatments, and brings us closer to a cure for the rare medical condition ROHHAD. The relief of those in need by providing support for those suffering with ROHHAD, their carers, families and siblings. The advancement of Education by funding and promoting research that will lead to new understanding and treatments and brings us closer to finding a cure for the rare medical condition ROHHAD. The ROHHAD association will achieve the 4 purposes detailed above by embarking on an extensive raising awareness campaign so that the needs of the children(and rarely adults) with ROHHAD and everyone who cares for them are recognised by wider society. The ROHHAD association will also embark on an extensive fundraising campaign.
Operations:
What the charity is set up to do and how it does this:
The Rohhad Association supports people affected by ROHHAD Syndrome through improved quality of life initiatives, raising awareness, and advancing research. We work closely with the ROHHAD International Consortium—founded by our co-founder Elisabeth Hunter during the COVID pandemic—and collaborate with charities worldwide, including ROHHAD Fight Inc, ROHHAD Association Argentina, Belgium, and Nordic. Each year, our core activities include awareness campaigns, fundraising, advocacy, forming strategic partnerships, hosting online support groups, providing one-to-one peer and family support, and funding ongoing research with teams within the Consortium.
Charity Status: Active
Constitutional Form: SCIO (Scottish Charitable Incorporated Organisation)
Constitutional Form Date: 28 May 2015
Main Operating Location: West Dunbartonshire
Number of Staff: 0
Number of Volunteers: 1-50
Purposes: "the advancement of education", "the advancement of health", "the saving of lives", "the relief of those in need by reason of age, ill-health, disability, financial hardship or other disadvantage"
Beneficiaries: "Children or young people", "People with disabilities or health problems", "Other defined groups"
Types Of Activity Undertaken: "It carries out activities or services itself"
Annual Submissions:
Year End Income Expenditure Annual Return Received Accounts Received Latest Annual Reports and Accounts
31 May 2021 £24,849 £180,160 29 Apr 2022 Yes
31 May 2022 £52,417 £64,191 22 May 2023 Yes
31 May 2023 £42,605 £16,483 28 Mar 2024 Yes
31 May 2024 £15,075 £3,824 24 Feb 2025 Yes
31 May 2025 £33,227 £11,103 17 Feb 2026 Yes Download
If an annual return has been received on time (within nine months of the Year End Date), the 'Annual Return Received' box is green   . If an annual return is late, the box is red   .
Income and Expenditure:
Charity Trustees:
First Name Last Name
Elisabeth Hunter
Thomas Meechan
Tanya Ashman
Stephen Whyte
From 09 March 2026, OSCR is required by law to publish the names of a charity’s trustees as part of its Scottish Charity Register entry. We are also required to publish each charity’s annual report and accounts as received from this date, which may include the names of certain individuals. The only exceptions to publication are where a charity or one of its charity trustees applies for this information to be excluded, and OSCR is satisfied that publishing it would jeopardise the safety or security of a person or premises.

If the charity trustee information on a Register entry appears blank, this may mean that an exemption applies or that the charity has not yet provided the required details to OSCR. Supplying this information will become mandatory as part of future annual submissions.
Copyright

From 30 June 2025, OSCR began collecting charity trustee information through OSCR Online. Providing this information is a legal requirement for all charities. The names of trustees will be published on the Scottish Charity Register from early 2026 to promote transparency and strengthen public trust in the sector.

© Office of the Scottish Charity Regulator 2006. Crown Database Right 2006.

The Scottish Charity Register ("The Register") is subject to Crown database right.

The Scottish Charity Register is licenced under the Open Government Licence v3.0.

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When you use this information under the OGL, you should include the following attribution: © Crown Copyright and database right 2020. Contains information from the Scottish Charity Register supplied by the Office of the Scottish Charity Regulator and licensed under the Open Government Licence v.3.0.

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  • the names of a charity’s trustees (exemptions apply)
  • its annual report and full accounts, if submitted after 9 March 2026
    (Accounts submitted prior to 9 March 2026 will be redacted, or may not be published, depending on the charity’s income level or legal form.)

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