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ACC Support UK provides support and resources for patients, families and carers affected by adrenocortical carcinoma. This group was formed from a joint venture between two patient groups, AMEND and Neuroendocrine Cancer UK. ACC Support provides up to date information helping patients navigate their ACC journey. Members can access peer support through regional get-togethers, an annual patient information day, and private social media groups.

Innovations:

• Professional psychological counselling service (free to members)
• Neuroendocrine Cancer UK specialist nurse helpline
• Patient experience videos
• Emotional wellbeing resources
• Community Advisory Group volunteers to provide the patient voice in research

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ADSHG is for those with Addison’s disease, adrenal insufficiency and all who support them. It provides advice and information to people living with the condition to improve understanding, confidence and quality of life. It connects people with Addison’s disease to try and ease the loneliness and fear of a rare diagnosis; through their private online forum, social meetings, Blogs and magazine. As well as providing patient information leaflets for all ages, the charity has information for schools, employers and healthcare professionals – from dentists to surgeons. On their online shop, the charity also offers hydrocortisone emergency injection kit components and storage options. It offers grants to clinicians and can help recruit research participants.

                                                    Innovations:

• Published the book “Living with Addison’s” for patients and professionals to provide   practical day-to-day advice
• Integral to the development of the new NHS steroid card
• Provide Paramedic Training in Adrenal Crisis Management
• YouTube channel, videos focused on disease management, including injection preparation and technique
• Online shop to help make medic-alert identification and hydrocortisone emergency injection kits more accessible
• Hardship fund for free membership so all have access to information they can trust and support, regardless of their financial circumstances.

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Alex TLC provides information and support to patients, families and carers affected by adrenoleukodystrophy and adrenomyeloneuropathy. The charity connects patients and families to others with similar conditions. Patients can access peer support through the Health Unlocked Community (online forum), the Leukodystrophy Support page and the Leukodystrophy Carriers page. Members can also attend a community weekend conference. Alex TLC raises awareness by providing public and professional education through events and campaigns. The charity keeps its members abreast of recent research breakthroughs and assists pharmaceutical companies with the development of, and recruitment for, clinical trials.

Innovations:

• Support at Multidisciplinary Team meetings for patients and families
• Help with a child’s Education Health and Care Plan
• Home visits to provide support and reassurance following diagnosis
• Workshops for school staff on the conditions and impact on daily life
• Means-tested grants to provide access to care, equipment or therapy

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AMEND provides information and support to families affected by multiple endocrine neoplasia disorders as well as those with medullary thyroid cancer. It has separate groups for phaeochromocytoma & paraganglioma syndromes, and for adrenocortical cancer. AMEND has an excellent range of written and visual patient information for all age-groups. It provides peer support including a telephone helpline, monthly peer support zoom rooms, annual patient information days, a range of private social media groups, and WhatsApp groups for young adults. When surplus funds allow, there is annual grant funding available for research and AMEND itself regularly participates in projects as patient representatives. 

Innovations:

• Patient information resources (employment and returning to work, starting a family, dealing with uncertainty, talking to children about multiple endocrine neoplasia, comic books and cartoons for children)
• Professional counselling service (free for members)
• Volunteer at Centres of Excellence to talk to patients attending outpatient appointments
• Emotional wellbeing resources
• Community Advisory Group to provide the patient voice in research 

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The BTF provides patient friendly, evidenced based information which is available in a wide range of accessible formats and is aimed at patients and families of all ages. It is all available online but hard copies can be ordered free of charge. The information is in English, Polish, Urdu, Mandarin and Arabic. There are dedicated resources for young children and teenagers and a regular members’ newsletter. Patients are also supported with a medical query answering service, a telephone helpline, local groups and online forums. We support professionals through our annual BTF Research Award and our Travel & Training grants.

Innovations:

• ‘Meet the Thyroid Expert’ webinars – presentations by clinicians about all thyroid disorders which are aimed at patients and healthcare professionals

Resources to support patients with psychological wellbeing and weight loss

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The Brittle Bone Society supports patients and families affected by osteogenesis imperfecta. The Society provides factsheets and information packs for patients, healthcare professionals and educational institutes.  Patients and their families can also find travel tips, mental health awareness advice and links to financial support. Furthermore, there are grants offered to enable patients to purchase equipment such as wheelchairs and buggies. Young patients can access peer support tailored to their age groups through ‘Kids Club’ for 0-10 year olds and ‘Cool Bones’ for 11-15 year olds. 

Innovations:

• The Paediatric Osteogenesis Imperfecta National Team forum for clinicians
• NIHR non-commercial partner - any studies funded by the Brittle Bone Society funding streams are eligible for NIHR Clinical Research Network support
• Children’s hospital pack

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The CAH support group provides support and resources to patients and families affected by congenital adrenal hyperplasia. The group provides information leaflets for patients and families including booklets for children to help them to understand their condition. The CAH holds conferences and meetings for families and adults with congenital adrenal hyperplasia. These deliver education and an opportunity for peer support.

Innovations:

• Patient information (steroid card, school letter and letter to notify local ambulance trusts)
• Living with CAH forum
• MedKidz cartoon-style CAH information book

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Child Growth Foundation (CGF) makes a difference wherever growth is a concern.

We are the leading UK charity focusing on the support, understanding and management of rare growth conditions to improve the lives of children, adults and families affected.

 We:

• Support children, adults and families affected by rare growth conditions.
• Fund research into greater understanding and management of these conditions.
• Raise awareness and understanding of growth conditions, to improve their detection and support their earlier diagnosis.
• Support health professionals in the optimal diagnosis and management of these conditions.

CGF provides expert information, advice and support relating to all growth conditions including:

• Hypopituitarism
• IGF-1 Deficiency
• Precocious Puberty
• Silver Russell Syndrome (SRS)
• Smith Kingsmore Syndrome (SKS)
• Intrauterine Restriction (IUGR)
• Small for Gestational Age (SGA)
• SHOX
• Sotos Syndrome
• Tatton Brown Rahman Syndrome
• Weavers Syndrome
• Patients without a diagnosis

As research into growth conditions develops Child Growth Foundation continues to evolve to support children, adults and their families with both newly diagnosed conditions and those seeking diagnosis.

Innovations:

• Mental health information and links
• Annual Convention for children, adults and families affected
• Booklets and resources for patients and health care professionals
• Online patient stories
• Facebook support groups
• Telephone support line 0208 995 0257

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Dsdfamilies supports patients and families affected by Differences of, diverse Sex Development (DSD). Dsdfamilies provides information for patients of all ages, their families (including prenatal and postnatal information) and healthcare professionals. Dsdfamilies work with the NHS, UK and Scottish governments as well as across Europe to ensure the rights and health needs of those affected are addressed.

Innovations:

• Booklets in 15 languages including Arabic, Bulgarian and Catalan
• Sister site DSD Teens designed by and for young people with disorders of sex development
• Online interviews, guest posts and blogs
  
  

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Haemochromatosis UK supports people affected by genetic haemochromatosis as well as providing education to health care professionals. It has a helpline that can be used by both patients and employers. It provides a specialist advanced nurse practitioner service and a range of online educational materials for clinicians, patients and carers. The charity runs the annual Fernau Medical Research Award which supports research that will advance good clinical practice in the diagnosis and management of genetic haemochromatosis.

Innovations:

• Genetic testing and screening by post within 2 weeks
• Free genetic counselling services
• Specialist nursing support for patients and their families
• Online CPD accredited courses for GPs, nurses, pharmacists and physicians
• Regional get-togethers (online and in person)

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The Klinefelter’s Syndrome Association offers support and information to patients and families affected by Klinefelter’s Syndrome (KS) and XXY.  KSA aims to raise awareness of KS and XXY amongst the medical profession as well as promoting research into the management of KS and XXY. Information and resources are available for employers, teachers, social workers and healthcare professionals. Members can connect and share information by attending annual conferences, activity weekends and social meetings.

Innovations:

• KSA Stories (patient and parent stories)
• Fertility podcast
• Downloadable book: The KS Story - You are not alone

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Neuroendocrine Cancer UK exists to support anyone affected by Neuroendocrine Cancer: providing information, education, practical and psychosocial resources and services. 

NCUK have a peer support and nurse telephone helpline, peer support groups and a dedicated phone/Skype psychotherapy and counselling service. 

During the pandemic, the helpline service helped bridge the gap that redeployment of many nurse specialists contributed to. 

NCUK peer support groups are accessible in person (local) and online (local, regional and national) and are open to both patients and their supporters. As well as providing an opportunity for shared experiences, support and discussion, the online groups have had guest speakers and a NCUK nurse present to help address health-related concerns and questions.

The charity provides hard copy as well as online resources including new diagnosis patient packs, factsheets*, handbooks and alert wallet cards (Toilet Access, Carcinoid Crisis & High Risk Bowel Obstruction). 

The website also provides captioned videos, podcasts, patient stories and blogs. 

NCUK / INCA co-produced Factsheets* are available in the ten most commonly spoken languages worldwide.

Innovations:

• Family & Friends Support - through online forum and dedicated national support group.
• To assist with the cost of having to travel to specialist centres for disease-specific diagnostics and treatments, Neuroendocrine Cancer UK also provides a Travel Welfare Grant.
• A free financial guidance service re pensions and wills.
• Research Grant.
• Research publications: patient experience alongside incidence and prevalence data reporting.
• CPD accredited NCUK online learning Academy 
• RCN accredited Neuroendocrine Nurse Competency Framework.
• RCGP modules on Neuroendocrine Cancer for primary care HCPs.

My Nets app, a disease-specific mobile app for symptom tracking and storing health details

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Parathyroid UK provide support and information to patients with any type of parathyroid condition and their families. Peer support is accessible via several dedicated private groups on social media as well as what’s app groups, email and a telephone helpline. Patient information leaflets are available to order, download or read on the website and an Emergency Medical card for those with hypoparathyroidism is also available. The website has a wealth of clear information about parathyroid conditions including detailed self- help guides on living with hypoparathyroidism and primary hyperparathyroidism, information for health professionals and a collection of key research. Parathyroid UK work closely with their clinical advisors to provide reliable information, to raise awareness to health professionals and government about the unmet needs and challenges that patients experience and to promote research in which patients are regularly involved.

Innovations:

• Campaigned for first clinical trials on PTH and first clinical guidelines on hypoparathyroidism
• Co-authored studies on quality of life, calcium protocol & UK national audit on hypopara
• Sat on panel of NICE guidelines for primary hyperparathyroidism
• Videos and podcasts – perspectives from patients, clinicians and carers.
• Presentations at surgical training days and conferences eg Patient Voice at the ECE
• Parathyroid UK Medical Emergency Card
• Founded World Hypoparathyroidism Awareness Day June 1^st

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The Group is a subsidiary of and is managed by the Association for Multiple Endocrine Neoplasia Syndromes (AMEND). Membership and resources are free. It has developed a safety alert card for those with phaeochromocytoma and paraganglioma. Members can access peer support via regular Zoom chats, and a private Facebook group, and an Annual Patient Information Day.

Innovations:

• Free information resources about the diseases and living with them
• Professional psychological counselling helpline (free for members)
• Patient stories and videos
• Cartoon about PGL syndromes for children from age 5
• Community Advisory Group to provide the patient voice in research

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The Pituitary Foundation provides practical and emotional support for patients with pituitary disease. This is delivered through multiple channels – telephone, text, email, face-to-face and online. They have a members’ forum and 36 Local Support Groups across the UK that meet both in person and virtually. The Local Support Groups also work with local health services to improve awareness of the Pituitary Foundation and advocate for patients. They have online information covering treatments, wellbeing and lifestyle, emergency care, surgery and guidance for health care professionals.

Innovations:

• Virtual conference with international reach
• Regular Twitter chats where patients can ask questions to health care professionals
• Recorded series of ‘Ask the Experts’ Q&A videos, available online
• Peer support - putting patients and families in touch with trained buddies who share similar experiences

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Prader-Willi Syndrome Association UK provides a wealth of information and help for patients and their families and carers. It has a hub which delivers information about early childhood and school through to adulthood and employment. It provides email, telephone and WhatsApp helplines as well as support through Facebook. It awards funding for research and can support researchers by helping to recruit participants. The charity helps patients and families through the Education Health and Care Plan process, appeals, applications for funding for residential care, Disability Living Allowance applications and court cases. They work with families and Social Services within Safeguarding.

Innovations:

• AIM accredited courses, workshops and conferences
• Training packages for nurseries, schools and colleges, social workers, dieticians and other healthcare professionals
• Familynet - regional peer support groups with a programme of family events
• Attend specialist Prader-Willi Syndrome Clinics throughout the UK
• Regular Zooms for patients and for parents with children/adults of similar ages

https://tedct.org.uk/

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TSSS provides support, advice and information for woman, girls and families affected by Turners Syndrome. The TSSS enables patients and families to connect with one another locally. There are Facebook groups, local groups and friend groups that members can join.  Information booklets, leaflets and guidelines are available for GPs and other healthcare professionals as well as the most up to date information on treatments and new developments. The TSSS houses the Turner Syndrome register.

Innovation:

• Cardiac alert card
• Bungle pack - three booklets focusing on pregnancy
• Provide help sourcing external insurance services who assist and provide insurance
• Awards: The Keith and Marian Masters Award for Achievement & The TSSS Ambassador Award