01 Identity
Scottish charity record
- OSCR charity number
- SC045645
- Status
- Active
- Regulatory type
- Standard
- Designated religious body
- No
- Geographical spread
- UK and overseas
- Volunteers
- 1-50 volunteers
- Staff
- 0
- Postcode
- G83 0RJ
02 Purpose and work
What the charity exists to do
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.
Charitable 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
Activities
- It carries out activities or services itself
Constitutional objectives
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.
03 Annual returns
Income and expenditure history
| Year end | Income | Expenditure | Staff | Return received |
|---|---|---|---|---|
| 31 May 2025 | £33,227 | £11,103 | 0 | 17 February 2026 |
| 31 May 2024 | £15,075 | £3,824 | 0 | 24 February 2025 |
| 31 May 2023 | £42,605 | £16,483 | 0 | 28 March 2024 |
| 31 May 2022 | £52,417 | £64,191 | 0 | 22 May 2023 |
| 31 May 2021 | £24,849 | £180,160 | 0 | 29 April 2022 |
Figures are those reported by the charity and supplied in the OSCR bulk download. Blank facts remain distinct from zero.
04 Contact record
Principal office or trustees address
- Address supplied to OSCR
- 11A Lomond Crescent, Alexandria
- Website supplied to OSCR
- www.rohhadassociation.com
- Parent charity
- Not supplied
No direct external links on this profile. The official OSCR record and source documentation are available through BritDB’s dedicated source page.
05 Provenance
Source for this profile
© Crown Copyright and database right 2026. 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. BritDB is an independent service and does not claim to be the Scottish Charity Register.