Rohhad Association

27/04/2026

❤️❤️❤️🙌🏻👏🏼 amazing running in memory of Luca huge respect for Angelo Pucella and his family 🙏❤️

15/03/2026

Happy Mother’s Day to all of the incredible souls who have loved and raised their children both here on earth and for those in spirit. Today is a day we celebrate mothers and give thanks for the love, care and support they give to their children every day. For many it is also a day for where they are separated from their mother or their child(ren) it is not always a day of joy and happiness. Thinking of all who are grieving and missing their mother or child today and thinking of sending healing love and light your way. 💜🙏🫶🏻

28/02/2026

On Rare Disease Day, we stand united for ROHHAD.

Today, we honor:
💜 ROHHAD organizations working across borders
💜 Awareness accounts amplifying our voices
💜 Every individual and family living with ROHHAD
💜 Caregivers across the world who never clock out

ROHHAD is ultra-rare.
But our community is strong.

Across countries. Across languages. Across time zones.
We stand together.

United for awareness.
United for research.
United for every life affected by ROHHAD💜

Organizations:nordicmxru

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Awareness accounts and advocates





association

28/02/2026

On Rare Disease Day, we stand united for ROHHAD.

Today, we honor:
💜 ROHHAD organizations working across borders
💜 Awareness accounts amplifying our voices
💜 Every individual and family living with ROHHAD
💜 Caregivers across the world who never clock out

ROHHAD is ultra-rare.
But our community is strong.

Across countries. Across languages. Across time zones.
We stand together.

United for awareness.
United for research.
United for every life affected by ROHHAD💜

Organizations:nordicmxru

es




Awareness accounts and advocates





lisa association

28/01/2026

Good Morning beautiful souls, how has January been for you all? Hoping everyone has had a great festive period and that the new year is bringing many blessings your way. We have been a little quiet online the past few weeks however we have been very busy behind the scenes with ROHHAD Research! and making some plans for our awareness campaign and fundraisers in 2026. Despite incredible positive progress in ROHHAD research we still have a way to go to complete our mission to together though we can achieve this 💪🏻🙌🏻🫶🏻 can we rely on your continued support this year? We hope so as your support is vital to saving the lives of the ROHHAD children and adults. Keep an eye on our pages over the coming days and weeks to see how you can get involved and make a difference 🙌🏻 fans

18/01/2026

Good morning a message for our UK based families . A new research project has been funded & approved and we need your assistance with the project. All details are on the ROHHAD Association support page. Link in comments below.

01/01/2026

Happy New Year to All of our Inspiring ROHHAD warriors and your amazing families and friends. To our incredible charity supporters thank you for all of your help and support in 2025 it is deeply appreciated and we hope than we can continue to rely on your support in 2026. We wish you all a year full of good health, happiness peace and love and as our Scottish families and friends would say “Lang May Yer Lum Reek” ❤️

29/12/2025

Massive THANK YOU to all at the The Gore Court Arms for your continued support for the amazing ROHHAD children. Today we received a staggering donation of £3220.00 that they raised together to help us find a cure with their Christmas raffle and fundraiser. An incredible effort that we are deeply grateful for. Thank you to everyone involved from the businesses and locals who donated to those buying tickets and the legendary Delph Whitcombe who has supported Leah Baldock and her fellow ROHHAD warriors for many years. We wish you all the best when it comes and thank you all from the bottom of our hearts 💜🫶🏻🙏

It’s timeeeeeeee!!!! Massive prizes to be won. Worthy cause. See bar staff for details.

25/12/2025

Merry Christmas to all of our inspiring children, adults and families living with ROHHAD syndrome and to all of our incredible charity volunteers and supporters. We hope that all of you have a wonderful peaceful and blessed Christmas with your family and loved ones. Our thoughts and prayers are with our ROHHAD Angels and their families today and always.

We are deeply grateful to all who have supported our charity this past year and we hope that the ROHHAD warriors and their families can continue to rely on your incredible support in 2026. Wishing all of you a healthy and prosperous new year full of love and happiness.

Merry Christmas, Love and Light from all of us here at the Rohhad Association

❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️

26/11/2025

Wonderful news 🫶🏻

We have some fantastic news to share! Health ministers across the UK have agreed to extend the UK Rare Diseases Framework by one year!

This is a vital step that ensures continuity in rare conditions policy and allows each nation to continue delivering their Rare Diseases Action Plans. This means ongoing momentum in driving improvements in care for our community, building on the foundations established over the last five years.

This success is a direct result of the tireless campaigning and unwavering dedication of the rare conditions community over the past 12 months. We’d like to thank all our members for supporting our UK Rare Diseases Framework campaign.

Nick Meade, Genetic Alliance UK Chief Executive:
'This is amazing news, and testament to our community's advocacy work. This year will give us both continuity for ongoing work, and the time to remake the case that a) we need an overarching rare condition policy and b) it needs to be UK-wide. We now have a year to make this important case, and I'm proud Genetic Alliance UK will be convening a multistakeholder conversation to deliver this message.'

While we celebrate this extension, we know there is still much to do. As highlighted in our RDD 2025 report, 'More than you can imagine; opportunities for improving the lives of people with rare conditions' (geneticalliance.org.uk/wp-content/uploads/2025/03/More-than-you-can-imagine-Opportunities-for-improving-the-lives-of-people-living-with-rare-conditions.pdf) too many are still waiting years for a diagnosis, experiencing disjointed care, and struggling to access vital services.

This one-year extension is a crucial opportunity for our community to refocus, develop priorities, and shape what the longer-term future of rare conditions policy should look like.

Genetic Alliance UK, working with our members and key stakeholders from the rare conditions community, will now start work to bring together the collective voices of people with lived experience who know best how the system needs to change.

Visit our website for info on our framework campaign and our work to secure this extension (geneticalliance.org.uk/our-campaign-for-a-new-uk-rare-diseases-framework/)