Registered charity 1215632

Foundation Exploring Skeletal Dysplasias Together (Fest)

What it does

Operating throughout England and Wales and dedicated to improving the lives of people with skeletal dysplasia and their families. Our work spans advocacy, education, research, community support, and international collaboration. We exist to bridge gaps in policy, practice, and lived experience

In the charity's own words, from the register.

Its charitable purposes

THE OBJECT OF THE CIO IS TO PRESERVE AND PROTECT THE HEALTH OF PERSONS AFFECTED BY SKELETAL DYSPLASIA COMMONLY KNOWN AS RESTRICTED GROWTH BY:- ADVANCING THE EDUCATION OF THE MEDICAL PROFESSION AND THE GENERAL PUBLIC ON THE SUBJECT OF GROWTH RESTRICTIVE SKELETAL DYSPLASIA; PROMOTING RESEARCH INTO THE MANAGEMENT OF SKELETAL DYSPLASIAS AND TO PUBLISH THE USEFUL RESULTS THEREOF; INFORMING ALL PEOPLE INTERESTED IN SKELETAL DYSPLASIAS BY COLLATING A COLLECTION OF THE MOST UP-TO-DATE SCIENTIFIC INFORMATION, BOTH MEDICAL AND PSYCHOSOCIAL; AND SHARING RESEARCH, INNOVATION AND COLLABORATIONS, AS WELL AS CLINICAL AND PATIENT SUPPORT EXPERIENCE, THAT CAN POSITIVELY CHANGE THE LIVES OF THOSE WITH SKELETAL DYSPLASIAS. NOTHING IN THIS CONSTITUTION SHALL AUTHORISE AN APPLICATION OF THE PROPERTY OF THE CIO FOR THE PURPOSES WHICH ARE NOT CHARITABLE IN ACCORDANCE WITH [SECTION 7 OF THE CHARITIES AND TRUSTEE INVESTMENT (SCOTLAND) ACT 2005] AND [SECTION 2 OF THE CHARITIES ACT (NORTHERN IRELAND) 2008].

From its governing document, as recorded on the register.

Causes

What it works on: Disability
Who it helps: Disabled people
How it works: Provides services
Provides advocacy, advice or information
Sponsors or carries out research

The charity chose these from the Charity Commission's list.

Where it works

Elsewhere

Throughout England and Wales

The places the charity told the Commission it works in.

Income and spending

The register has no income or spending figures for this charity.

Grants awarded to it, published on 360Giving

No grants to this charity appear in 360Giving data.

Only funders that publish their grants to 360Giving are included, and many do not. These are amounts funders awarded, which can differ from what the charity received in a given year, so they are shown apart from the accounts figures above.

Trustees

5 trustees run the charity.

Stephanie Rachael BirchChairAppointed 1 June 2022
Anna-Marie Claire BowlesAppointed 26 February 2025
Candace Helene ReadingAppointed 26 February 2025
Rebecca Jane LynchAppointed 1 June 2026
Rocana Jayne Helen BrayAppointed 26 February 2025

Trustees are responsible in law for the charity. Names are as they appear on the public register.

About this charity

Charity number: 1215632
Status: Registered
Registered with the Commission: 5 November 2025
Governing document: CIO - FOUNDATION Registered 05 Nov 2025
Website: www.myskeletaldysplasia.org.ukAs the charity gave it on the register.
Council area of its contact address: Not matched to a council area

Sources

Register details, income, spending, trustees and filing dates: Charity Commission for England and Wales, register of charities. Loaded by OpenEconomy on 18 April 2026.
Grants awarded: 360Giving open grants data, from funders that publish there, as loaded by OpenEconomy.