# CAMBRIDGE RARE DISEASE NETWORK

## Details

- **Country:** England & Wales
- **Charity number:** 1166365
- **Other names:** CRDN, CamRARE
- **Status:** Registered
- **Legal form:** CIO
- **Registered:** April 5, 2016
- **Register:** https://register-of-charities.charitycommission.gov.uk/en/charity-search/?p_p_id=uk_gov_ccew_onereg_charitydetails_web_portlet_CharityDetailsPortlet&p_p_lifecycle=0&p_p_state=maximized&p_p_mode=view&_uk_gov_ccew_onereg_charitydetails_web_portlet_CharityDetailsPortlet_regId=1166365


## Contact

- **Address:** B C S, 5 Station Court, Station Road, Great Shelford, CAMBRIDGE
- **Postcode:** CB22 5NE
- **Phone:** 07725039780
- **Email:** info@camraredisease.org
- **Website:** www.camraredisease.org



## Activities

**Objects:** 1) THE RELIEF OF SICKNESS OF PERSONS WITH RARE DISEASES, IN PARTICULAR BUT NOT EXCLUSIVELY BY THE PROVISION OF SUPPORT, ADVICE AND INFORMATION FOR SUCH PERSONS THEIR FAMILIES, CARERS AND THOSE WORKING WITH AFFECTED INDIVIDUALS.2)TO ADVANCE THE EDUCATION OF THE PUBLIC IN GENERAL ON THE SUBJECT OF RARE DISEASES AND RELATED SYNDROMES AND TO PROMOTE RESEARCH FOR THE PUBLIC BENEFIT IN ALL ASPECTS OF THAT SUBJECT AND TO PUBLISH THE USEFUL RESULTS.

**Activities:** CamRARE makes life easier for those living with rare conditions. Regionally we support affected families through community activities. We connect, educate and collaborate with stakeholders and the public on rare disease research, diagnosis, treatments and care through our platforms RAREsummit, RAREfest, Companies Forum and RDRN. We undertake, support and connect patients with research.




## Classification

- **How:** Provides Services, Provides Advocacy/advice/information, Sponsors Or Undertakes Research, Acts As An Umbrella Or Resource Body
- **What:** Education/training, The Advancement Of Health Or Saving Of Lives, Disability
- **Who:** Children/young People, People With Disabilities, Other Charities Or Voluntary Bodies, The General Public/mankind



## Areas of operation

- Throughout England And Wales



## Finances

| Period end | Income | Expenditure | Assets | Employees |
|---|---|---|---|---|
| Dec. 31, 2024 | £181873 | £231715 | — | — |
| Dec. 31, 2023 | £223867 | £191845 | — | — |
| Dec. 31, 2022 | £141001 | £123309 | — | — |
| Dec. 31, 2021 | £163501 | £103210 | — | — |
| Dec. 31, 2020 | £163000 | £164000 | — | — |



## Trustees

- **Emma Green** (Chair) — appointed Oct. 3, 2022
- Billy Michael Lucas — appointed May 13, 2025
- Dr Catherine O'Sullivan — appointed March 8, 2025
- Loretta MacInnes — appointed Oct. 3, 2022
- Ruth Diazaraque — appointed March 8, 2025
- Susan Berry — appointed July 29, 2019
- William Henry Waddington Eldridge — appointed Dec. 9, 2025