Finance Score: -6

Governance Score: 0

Support Score: 0

Spending falling: -1
Multiple Deficits and declines: -5
No PartB

No supporters identified

Overall GiG Score: -6

ACTION FCS

Raising awareness of Familial Chylomicronaemia Syndrome (FCS) and related conditions; educating patients, medical personnel and the public in general about FCS; supporting people with FCS and those affected by it to live a full, healthy and integrated life; advocating for access to excellent care and new medicines for all patients with FCS.

Analysis by Giving is Great

Financial issues to consider:

A PartB annual return has not been required and so detailed financial information is not available from the online data
Spending has fallen significantly over the last 5 years relative to the previous period
Income has been volatile and on several occasions in recent years less than spending

Financial Data ?

Income & Spending ?

Sources of Income ?

Y/E		Income £k	Spending £k	Surplus/ Deficit	Fundraising Cost £k	Total Funds £k	Unrestricted Funds £k	Mths Rsrvs	Staff
31/12/22	*	£0	£0	£0	n/a	n/a	n/a	n/a	n/a
31/12/21		£2	£4	£-2	n/a	n/a	n/a	n/a	n/a
31/12/20		£3	£2	£1	n/a	n/a	n/a	n/a	n/a
31/12/19		£4	£5	£-1	n/a	n/a	n/a	n/a	n/a
31/12/18		£5	£5	£1	£0	£0	£0	n/a	0
31/12/17		£21	£2	£19	£0	£0	£0	n/a	0
31/12/16		£17	£5	£12	£0	£0	£0	n/a	0

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Highest pay bracket: less than £60,000

Established: 8 years

www.actionfcs.org

info@actionfcs.org

07920715366

Charity Commission for England and Wales

Tweets

Listed activities

The Advancement Of Health Or Saving Of Lives

GiG Classification

Services for people with disabilities

How it operates

Provides advocacy/advice/information

Where it operates

Throughout England And Wales,

Who it helps

Other Defined Groups

Who supports them? ?

We have no records of donations from grant makers.

How is it governed?

Trustees (4)

Current Trustees appointed

Gender Split

FINION NICHOLAS PATRICK DAY-LEWIS Appointed: 2021

HELEN OLUFUNKE ADERIN Appointed: 2018

JILL PRAWER (Chair) Appointed: 2016

MRS PAT WADE Appointed: 2017

Legal constitution

Charity registered in England & Wales on 04/03/2016, number: 1165873

Gift Aid

NOT registered with HMRC for Gift Aid

Policies in force

Complaints handling
Conflicting interests

Filing Record

7 returns made; AR22: 111 days late,

Main office

36 GASKELL STREET
LONDON
SW4 6NS

Objectives

THE OBJECTS OF THE CIO ARE TO RELIEVE SICKNESS AND PRESERVE AND PROTECT GOOD HEALTHOF PERSONS SUFFERING FROM FAMILIAL LIPOPROTEIN LIPASE DEFICIENCY (LPLD) AND RELATEDCONDITIONS BY:1. RAISING AWARENESS OF LPLD AND RELATED CONDITIONS;2. EDUCATING PATIENTS, MEDICAL PERSONNEL AND THE PUBLIC IN GENERAL ABOUT LPLD;3. SUPPORTING PEOPLE WITH LPLD AND THOSE AFFECTED BY IT TO LIVE A FULL, HEALTHY ANDINTEGRATED LIFE;4. ADVOCATING FOR ACCESS TO EXCELLENT CARE AND NEW MEDICINES FOR ALL PATIENTS WITHLPLD.NOTHING IN THIS CONSTITUTION SHALL AUTHORISE AN APPLICATION OF THE PROPERTY OF THE CIOFOR THE PURPOSES WHICH ARE NOT CHARITABLE IN ACCORDANCE WITH SECTION 7 OF THECHARITIES AND TRUSTEE INVESTMENT (SCOTLAND) ACT 2005 AND SECTION 2 OF THE CHARITIESACT (NORTHERN IRELAND) 2008.

Data Sources