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Addison's SOS - Sanctuary of Support for people with Adrenal Insufficiency. Here when you feel lost, concerned, puzzled or poorly.

Our charity has developed a range of clinical guidance publications in collaboration with our Clinical Advisory Panel (CAP) to inform and advise healthcare professionals.

Our bi-annual members' magazine is packed with news and information to live well with Addison's Disease.

Our impact

Make a donation

For Addison's Disease Day 2022, publishers Springer are generously giving you exclusive access to the 'Advanced Practice in Endocrinology Nursing' and two of their chapters on adrenal insufficiency, by Sofia Llahana, Irene Mitchelhill, Phillip Yeoh and Marcus Quinkler. Read more

New standalone guidelines regarding steroid-dependent patients have been issued by JRCALC for paramedic use. We explain how ADSHG worked with the team to make this vital addition, improving patient safety. Read more

Do you have Addison's or adrenal insufficiency? Please consider completing this new research questionnaire looking at post-traumatic growth (PTG), led by Rachel Berryman, final year BSc Psychology student at the University of Hull. Read more

Our Members-only ADSHG AGM 2022 will be held on Saturday 16th July 2022 from 11am. We'll be welcoming members to gather together to share experiences and friendship, mark our achievements over the past year, vote on charity matters and listen to a range of talks from experts in the field of adrenal insufficiency. Read more

Run anywhere and complete the Virtual TCS London Marathon 2022 within 24 hours, raising much-needed funds and awareness for Addison's Disease Self-Help Group. Read more

The Great South Run returns on 16 October 2022 in Portsmouth! Whether this is your first running event, or you're a seasoned pro, put on your trainers for our charity, join #TeamAddisons and help make a difference to people's lives. Read more

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Addison's SOS - Sanctuary of Support for people with Adrenal Insufficiency. Here when you feel lost, concerned, puzzled or poorly. Our charity has developed a range of clinical guidance publications in collaboration with our Clinical Advisory Panel (CAP) to inform and advise healthcare professionals.

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Amy and Friends | Cockayne Syndrome, Trichothiodystrophy

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Amy and Friends | Cockayne Syndrome, Trichothiodystrophy

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Amy and Friends was formed to support children/young adults and families suffering from Cockayne Syndrome and linked DNA repair disorders.

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Mary Del Trust (supporting carers) - Mair@marydel.com

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Mary Del Trust (supporting carers) - Mair@marydel.com

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Breast and Breastfeeding in Color Inc  - TinaKizzy@gmail.com

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Breast and Breastfeeding in Color Inc  - TinaKizzy@gmail.com

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About Us - Gastroparesis: Fighting For Change - Advocating for a Cure

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Our mission is to empower the gastroparesis community…

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Float Like a Buttahfly – Kerry Wong – Sarcoidosis News

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Healthcare Public Relations Agency | Healthcare PR Firms - Intent Health

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Healthcare is personal. As a healthcare PR agency, we want to bring more intent with our approach and truly engage with our audiences in a more personal level. As outsiders, we should not assume that we understand the intricacies of living with an acute or chronic condition. Campaigns created in a boardroom bubble will never reverberate as well as those built by a community of people with different life experiences.

Which is why, as a healthcare public relations agency with true intent, we're creating a community built on distinct life experiences, amplifying stories that really resonate with people. Stories they act on and that truly benefit patients, carers and healthcare professionals. Our founding principle is that diversity, in all its forms, creates a stronger team and campaigns that resonate with a multi-cultural society.

From the ground up, we are intentionally different from other healthcare PR companies. We may just be starting, but we have some big ideas and the determination to make them real. There are four parts to our commitment to building inclusive foundations.

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Healthcare Public Relations Agency | Healthcare PR Firms - Intent Health

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Healthcare is personal. As a healthcare PR agency, we want to bring more intent with our approach and truly engage with our audiences in a more personal level. As outsiders, we should not assume that we understand the intricacies of living with an acute or chronic condition.

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Pathfinders Neuromuscular Alliance - Supporting adults with muscle-weakening conditions

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Welcome to Pathfinders Neuromuscular Alliance

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Pathfinders Neuromuscular Alliance is a user led charity, run entirely for and by people with muscle-weakening conditions. We provide social and support services, a range of information guides, events and outreach, and campaign on issues that matter to adults living with muscle-weakening conditions.

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At RareQoL, we transform lives by promoting Equality Diversity and Inclusion. Contributing to health equity and empowering our communities.

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“Working with Zainib Hussain from Zainyspeaks for an emotional detox session was a truly transformative experience. As a solo business owner, I often find myself spinning multiple plates. The stress of juggling these roles can take a toll, and in the past, it has led to overwhelm and burnout.

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Sorry, this entry is only available in Welsh.

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The Cystinosis Research Network’s vision is the acceleration of the discovery of a cure, development of improved treatments and enhancement of quality of life for those with cystinosis.

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Race Council Cymru (RCC) | Promotion of equality Community Cohesion, and diversity by the elimination of discrimination on the grounds of race, gender, disability, sexual orientation or religion.

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Promotion of equality and diversity for by the elimination of discrimination on the grounds of race, gender, disability, sexual orientation or religion.

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In March 2024, NICE announced their decision not to recommend Sanofi’s Xenpozyme (Olipudase Alfa) as a treatment for ASMD NPD. We are challenging this decision and need YOUR help! (See News/Blog)

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Keira’s Kingdom – Support for those living with a life-limiting mental or chronic illness.

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Keira’s Kingdom provides bespoke holistic support to anyone currently living with a life-limiting, mental or chronic illness.

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Learning Disability - Autism - Down's Syndrome

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Mencap is a UK charity for people with a learning disability. We support their families and carers, too. We want the UK to be the best place in the world for people with a learning disability to live happy and healthy lives.

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Addison's SOS - Sanctuary of Support for people with Adrenal Insufficiency. Here when you feel lost, concerned, puzzled or poorly.

Our charity has developed a range of clinical guidance publications in collaboration with our Clinical Advisory Panel (CAP) to inform and advise healthcare professionals.

Our bi-annual members' magazine is packed with news and information to live well with Addison's Disease.

Our impact

Make a donation

For Addison's Disease Day 2022, publishers Springer are generously giving you exclusive access to the 'Advanced Practice in Endocrinology Nursing' and two of their chapters on adrenal insufficiency, by Sofia Llahana, Irene Mitchelhill, Phillip Yeoh and Marcus Quinkler. Read more

New standalone guidelines regarding steroid-dependent patients have been issued by JRCALC for paramedic use. We explain how ADSHG worked with the team to make this vital addition, improving patient safety. Read more

Do you have Addison's or adrenal insufficiency? Please consider completing this new research questionnaire looking at post-traumatic growth (PTG), led by Rachel Berryman, final year BSc Psychology student at the University of Hull. Read more

Our Members-only ADSHG AGM 2022 will be held on Saturday 16th July 2022 from 11am. We'll be welcoming members to gather together to share experiences and friendship, mark our achievements over the past year, vote on charity matters and listen to a range of talks from experts in the field of adrenal insufficiency. Read more

Run anywhere and complete the Virtual TCS London Marathon 2022 within 24 hours, raising much-needed funds and awareness for Addison's Disease Self-Help Group. Read more

The Great South Run returns on 16 October 2022 in Portsmouth! Whether this is your first running event, or you're a seasoned pro, put on your trainers for our charity, join #TeamAddisons and help make a difference to people's lives. Read more

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Addison's SOS - Sanctuary of Support for people with Adrenal Insufficiency. Here when you feel lost, concerned, puzzled or poorly. Our charity has developed a range of clinical guidance publications in collaboration with our Clinical Advisory Panel (CAP) to inform and advise healthcare professionals.

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Alstrom Syndrome – Support & Information

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It is important to remember, AS symptoms may develop at different stages and not everyone is affected by all of the symptoms. Even amongst siblings the symptoms can vary.

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This is a site for patients in the UK and Ireland affected by PTEN alterations, PHTS, Cowdens or BRRS.

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Autistic UK CIC | Autism Support for Adults | Representing Our Community

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Like a lot of autistic people, we’re not always so ready to talk about ourselves, but we’re involved in a lot of projects.... so we’ve created this site to showcase what we get involved in, for the autism community in the UK.

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We help parents when parenting is hard. A nonprofit you can rely on for information, support, and community for your parenting.

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Ataxia
www.ataxia-and-me.org

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RARE Youth Revolution

Powering up the voices of the youth rare disease community
https://www.rareyouthrevolution.com/

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RARE Revolution MagazineTurning the tide for rare disease

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https://rarerevolutionmagazine.com/

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Teddington Trust SCIO

Support and guidance for the xeroderma pigmentosum (XP) community
https://www.teddingtontrust.com/

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m4rd.org

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Patient group for r(20) syndrome – rare epilepsy

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Emotional Support for Families

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Let's talk, schedule your

Free Consultation

I am looking forward to hearing from you.

Do you care for a child with medical needs?

This is incredibly challenging and I thank you for all that you do.
I can offer you 5 practical tools to strengthen your family emotionally and lift you out of isolation. You will learn to build your child's self-esteem, give strength in painful moments, foster strong family bonds and create joyful memories.

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Families With Medical Needs And Disabilities | Respectful Parenting

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Respectful Parenting offers classes and consultations for parent education in support of families with disabilities, rare diseases or medical needs. A certified Hand in Hand Parenting instructor Founded in attachment theory and trauma informed this approach fosters families emotional wellbeing.

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A Poland Syndrome Charity Site - pip-uk.org

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Our Mission and Vision

To provide a network of specialist nurse support for every person with a rare disease.

To deliver innovative support to nurses (and other healthcare professionals) involved in rare disease, so that they are more empowered to provide better help for rare disease patients and families on their rare disease pathway.

To establish a network of specialist nurses globally providing support and care for everyone affected by a rare disease.

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To provide a network of specialist nurse support for every person with a rare disease. To deliver innovative support to nurses (and other healthcare professionals) involved in rare disease, so that they are more empowered to provide better help for rare disease patients and families on their rare disease pathway.

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Natalie Pryor - Self advocate - Natalie.pryor@gmail.com

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Natalie Pryor - Self advocate - Natalie.pryor@gmail.com

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The UCM is a university with a long history and broad social recognition

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#Dazzle4Rare is a cross-community undiagnosed and rare disease awareness week. Unlike most awareness events, this week is meant to enable rare disease communities of all sizes share messages for one another, signal boosting the messages to reach a wider audience. The base concept is simple - when you share for another community, they are able to reach your audience who may benefit from hearing their message or learning more about that. In doing so, others will share YOUR message enabling you to reach an audience you would not normally.

You can take a look at our past events on Facebook as well as the hashtag on social media since 2016 to get an idea of what messages are shared and what people are talking about. The end goal is always for organisations, advocacy groups, advocates, and patients to reach outside their "bubble" and exchange crucial messages with others allowing them to extend their reach.

#Dazzle4Rare is an on-going conversation and it is not meant as another means for people to "preach to the choir" but rather to work together as one large community for the benefit of all. It takes a lot of work, a lot of communication, but it worth the effort to increase the reach of every message that much more.

How to participate in #Dazzle4Rare

There are a lot of ways to participate in #Dazzle4Rare every 2nd week of August! The most SIMPLE way is to follow hashtag #dazzle4rare on Facebook, Twitter, Instagram, LinkedIn, or whatever platform you use. As you scroll through the event posts, share rare disease posts and help elevate and signal boost undiagnosed and rare voices.

If that's not enough and you want to take participation to the next level, here some of our top tips for individuals and NPO/charity organisations!

For Individuals

As an individual: you can follow the Facebook event page for each a list of participating communities' approved messages (or see our Approved Messages page.) You can join the event and click "" to show your participation as well as stay informed of what's going on with the event.

Now, head over to the mobile-phone friendly page on that will walk participants through the steps of choosing , , or to share posts. Once you click the social platform icon of your choosing, you can scroll through the posts hash-tagged #Dazzle4rare (each link takes you right to those posts directly), and share as usual! That simple!
Note: For Instagram you would need Regrann or a similar program or using screenshots.
For Organisations, Non-Profits, and Advocacy Groups

As an organisation: We welcome any non-profit, charity, or rare disease organisation who would like to participate. The goal is for groups of all sizes to share to amplify rare disease messages during the campaign. Many organisations spend the whole year "preaching to the choir". Dazzle4Rare is a way for your NPO, charity, or advocacy group to share messages with the folks who are likely to care most about rare and undiagnosed communities.

First, submit your 280 character message which includes the hashtag #dazzle4rare and your logo for our participants page, sign up for our NPO/charity email list below so you can receive the list of approved messages and links to the event assets you can use to schedule your website, blog, social media, and other posts.
Please note: Our email list is experiencing technical issues. YOU WILL NOT RECEIVE AN IMMEDIATE EMAIL TO VERIFY YOUR SUBSCRIPTION. Emails will be added to the list manually. You can use the form below to join or send us an email us and ask to be added to the list.
Please remember we use the honour system - by participating you agree to share messages - NOT JUST YOUR OWN - you're already doing that every day! However you choose to participate, keep an eye on the hashtag #Dazzle4rare on Facebook, Twitter, and Instagram and share as you see fit.

We invite all approved NPO/charity organisations submitting their messages to also become an event co-host. There is no cost associated with participating or becoming an event co-host to our Facebook event. This opportunity is open to any official Facebook page or advocacy page as well. Co-hosts may post directly to the event page with their approved message or announcements for the week.

We encourage all of our co-hosts to share the event on their website, blog, support forums, and social media. Inviting family, friends, and colleagues to the event page helps to increase the number of eyes on the event and helps keep our virtual attendees informed as the event approaches and through the event week itself.

You can and absolutely create social media posts using the hashtag so that folks following the hashtag can see your posts.

This year we're selling merch and accepting gift donations to help support our work and yours! We hope to raise enough money to repeat our 2020 NPO/charity raffle. One registered NPO/charity will be chosen in a random raffle to win whatever we're able to raise. Our goal is to raise at least £150 as we did in 2020. The Canada based organisation ANE International won last year's participation raffle. We really hope we're able to do this again for our participating NPO/charities!

We try to share as many messages as we can and always encourage individuals to share their stories. One of the most educational parts of #Dazzle4Rare is people sharing their stories. If not for that, many of us would not have learned about many of the conditions we now have come to care deeply about. It has also been a great way for advocates to get to know one another and form lasting bonds and create opportunities to continue to raise awareness outside of #Dazzle4Rare week.

Any questions? Please don't hesitate to Contact us.

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Dazzle4Rare is a cross-community undiagnosed and rare disease awareness week. Unlike most awareness events, this week is meant to enable rare disease communities of all sizes share messages for one another, signal boosting the messages to reach a wider audience.

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Rare Disorders Kenya is a community of people with rare diseases and all who support them. We provide a united voice for the rare disease community by capturing the experiences of patients and families and raising the profile of rare diseases across Kenya.

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Metabolic Support UK is a leading patient organisation for Inherited Metabolic Disorders, supporting thousands of families worldwide that have no other support.

Metabolic Support UK (formerly known as Climb) was inspired by Jennifer Rachel Greene (1978 - 2007), who was born with a rare metabolic disorder called Cystinosis.

Finding little information and support available following this devastating diagnosis, Jen's parents, Peter and Lesley Greene, with help from family, friends and the medical profession, launched the charity in November 1981, encompassing all metabolic disorders.

Its mission then: to be the world's leading advocate and provider of bespoke support to families; signpost to the best experts; raise awareness amongst the medical, healthcare, social care and teaching professions; and fund research for treatments and ultimately cures.

Metabolic Support UK's work and reputation in delivering these objectives has spread from the UK to Europe and beyond. It is part of a worldwide collaborative network of groups and organisations, ensuring it is at the forefront of developments such as newborn screening and treatments.

Today, Metabolic Support UK continues to be committed to its vision of raising awareness and providing bespoke support to improve the lives of those affected by Inherited Metabolic Disorders, keeping Jen's legacy alive.

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Metabolic Support UK is a leading patient organisation for Inherited Metabolic Disorders, supporting thousands of families worldwide that have no other support. Metabolic Support UK (formerly known as Climb) was inspired by Jennifer Rachel Greene (1978 - 2007), who was born with a rare metabolic disorder called Cystinosis.

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The Rare Advocacy Movement (RAM) is the first community-based network of professionals dedicated to protecting the interests of the global community of people living with rare conditions and their carers. RAM is dedicated to establishing a unified rare disease ecosystem of community-based and community-focused stakeholders working together to bring therapeutics to the community through sustainable community-based programs, equitably accessible resources and inclusive opportunities (i.e streamline the therapeutic development process through real world community-based insights. RAM Collaborations ). RAM is committed to transparency, the correction of inaccurate biases and the removal of bottlenecks from the rare disease ecosystem. The global rare community's voice has unified to demand respect and to be treated as equally valuable stakeholders. As a result, RAM's network is collaborating with trusted industry stakeholders to

Rare Disease Stats

Rare Disease Stakeholder SNAPSHOT

The current rare disease ecosystem consists of the following stakeholders:

​

1. The Patient Community

2. The Caregiver Community (Parents and Parental Guardians)

3. The Care Partner Community (Spouses and other non-parental partnership roles)

4. Community-based Activists and Organizations

5. Advocacy-based Non-profit Organizations/Charities

6. Pharmaceutical/Biotechnology Companies

7. Insurance Providers

8. Researchers/Scientists/Academia

9. Healthcare Providers

10. Industry Service Providers (i.e. clinical research organizations, commercial-phase consultants, etc.)

11. Regulatory Agencies

12. Pharmacies (medication dispensaries/distributors)

​

The above list of stakeholders found across the rare disease ecosystem consist of professionals dedicated for a variety of reasons to exploring opportunities within the rare disease therapeutic development ecosystem. While the theme of patient-centricity is often at the core of each exploratory discussion, each rare disease focused stakeholder's primary objective tends to center around bringing safe and effective therapeutic treatments to the market. For comprehensive community-based professionals, with a pulse on accurate community perspective, insights and experiences (PIE), there is a basic understanding that all collaborations must be both mutually beneficial and sustainable. RAM is dedicated to unifying the community-based landscape with all community-focused stakeholders authentically determined to develop equitably accessible resources, services and opportunities for patients and their families.

Why is it so important to understand and identify which landscape you are working within?

​

It is important to understand which landscape you are working within because, while there may be shared goals amongst stakeholders, each group consists of varying, and often rapidly evolving, perspectives, agendas, and motivations.

At times, different agendas may not align and conflicts of interests occur. Because each stakeholder's perspective is unique and not always understood by members of other stakeholder groups, when collaborating, a member from each stakeholder group must be actively present for focus groups to truly be effective, inclusive and comprehensive. Beyond inclusive stakeholder engagement, it is vital that each stakeholder contributing to the development of strategies are community-focused.

Through the development of several RAM Collaborations , the RAM network has rapidly evolved to function as a community-based stakeholder collaboration model for comprehensive rare disease community-based relationship building. Commercial content that perpetuates inaccurate references and misleading perspectives harm community relationships and disrupt the therapeutic development process. For this reason, RAM has developed rare360 program hosted by the Adults Living Rare Initiative. If you are interested in collaborating with and/or joining the efforts of the Rare Advocacy Movement, please do not hesitate to , a . C ontact Us

RAM is a global community-managed network comprised of dedicated rare disease, disability, chronic medically complex, neurodivergent activists and lived-experience experts, who support the efforts to understand and support the evolving real world healthcare ecosystem from the community's perspective and develop sustainable solutions that address ongoing issues that affect the community at large.

RAM is focused on making sure the community's 360° "Living Rare" perspective is not neglected nor misrepresented. The 360° "Living Rare" perspective includes:

1. the person with a chronic medical condition (i.e. rare condition, permanent disability, neurodivergent traits, etc.).

2. the caregiver(s) of a person with a chronic medical condition (a caregiver is a parent or parental guardian).

3. the care partner(s) of a person with a chronic medical condition (care partners are committed life partners that do not serve a parental guardian role to the person with a chronic medical condition. A care partner can be a sibling, a spouse, a long-term live-in roommate, etc.)

RAM is also the only organized community-based network that has developed diversity, equity, inclusion (DEI) solutions to all twelve types of rare disease focused stakeholders to aid in resolving the current institutionally re-enforced silos that have neglected, abused and exploited people of color within the rare disease community.

​

RAM represents the pulse of the real world patient community. Comprised of community-based activists, lived experience experts, and community-focused allies who believe in the power of collaboration and empowering the development of a sustainable patient advocacy ecosystem, in order to be allowed to enter the Member's Lobby , you must vow to abide by the Code of Conduct for Membership . ​

​​

The Member's Lobby provides each member with accessibility to develop RAM Collaborations .

RAM Membership does not automatically grant access to RAM HOUSE . RAM HOUSE is an exclusive server available only to community-based activists and condition-specific experience experts actively involved in an existing RAM Collaboration. As a result, RAM Membership is not required to participate or contribute in any RAM Collaboration. If you see a RAM Collaboration that interests you, please do not hesitate to connect with us or to discuss the development of other potential collaborations.

RAM believes in embracing a collaborative approach to identifying and addressing ongoing issues faced by the naturally diverse people of the real world patient community. RAM welcomes all community-focused stakeholders authentically interested in developing mutually beneficial collaborations to contact us .

RAM reserves the right to reject any collaboration request(s) and/or proposal(s) for any reason.

​ ​

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The Rare Advocacy Movement (RAM) is the first community-based network of professionals dedicated to protecting the interests of the global community of people living with rare conditions and their carers.

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Information and education on rare and genetic disorders and cancers. Hear directly from the rare community and professionals.