Archived News 2021

We are pleased to announce that we still have a limited stock of FDSSUK Logo'd face masks. These are available in both adult and children sizes for supporters who wish to help promote awareness of the charity as well as helping protect each other in line with current Government requirements to wear a face covering. 

Full details available here including photo's on how to acquire one whilst supporting our charity at the same time !

We are still looking for anyone who may wish to put themselves forward as a potential Trustee within the FDSSUK ?  We are always open to requests of interest and look for those volunteers who can bring experience and expertise to help us move the charity forward. 

We now have two co-chairpersons in place and anyone who may want to put themselves forward for a Trustee post should contact the Secretary via the link below.  

Email Secretary at:- stacy.richardson@fdssuk.org.uk

We are pleased to announce that the SME News team have awarded FDSSUK a winners place - as the best Not for Profit Organisation Supporting Fibrous Dysplasia 2020. More detailed information can be read in our latest Winter Newsletter , or  here, and to see the award published in the SME News follow the link at:- 

COVID-19 has led to the need for more and more consultations and appointments with your all important doctors and specialists having to be carried out on the telephone or using video conferencing products.  The face to face meeting in a surgery or hospital has been replaced in many cases and can prove difficult for some patients who have not been used to this way of speaking or seeing to their doctor. There are also technical issues that sometimes need to be resolved to allow the consultation to take place. Understanding this, we have been fortunate to be able to draw on the experience of two trustees to produce a guide on how best to prepare for these types of appointment. This will hopefully ensure both the patient and doctor will gain the most benefit from each session. For full details see the support information here in our support publications section. 

The 20th February sees the start of Global Awareness Week. 

February 20th-27th is FD/MAS Global Awareness Week. FD/MAS Global Awareness Week is a coordinated international campaign to raise awareness of fibrous dysplasia and McCune-Albright syndrome (FD/MAS) and build support for public health and research that will improve the lives of FD/MAS patients.

Follow what's happening on the FDSSUK Facebook, Instagram and Twitter feeds and also with our USA FD/MAS partners on their website.

A fantastic response with contributions which were posted on all our social media feeds. In recognition of the responses we have created a video collage of them which can be viewed here.  

We're sure you will agree they provided a valuable insight to the impact on the lives of the contributors of FD & MAS.

The Rare Diseases Day on the 28th February was used to raise awareness amongst the public and decision makers with many contributions which can be found here.

Can joint-up care provide a better service for rare disease patients?

The Government have recently published a white paper on NHS, Integration and Innovation: Working together to improve health and social care for all. The paper has proposals on how new collaborations between NHS England, and other local health and social care services will provide a better joint-up service for patients.

Specialist Healthcare Alliance (SHCA) is a coalition of rare disease charities, patient groups and corporate supporters. Chaired by Lord Sharkey, they campaign to parliament on behalf of people with rare and complex conditions. FDSSUK is part of this coalition and our trustee Heather Delaney is our representative.

SHCA are sending a response to Parliament outlining the crucial areas where specialist services for rare disease patients can be joined together, and greatly improved for the future. SHCA members were invited to share their suggestions. This was a chance for the rare disease community to highlight the areas within the health system, where real change is needed. There are gaps in services, which need to be filled.

We provided a case study and it was included in the report. We gave a very detailed description on how FD/MAS patients are affected by the lack of specialist services and we listed all of the other challenges patients face with their healthcare.

We were delighted to have the opportunity to contribute. We really hope this report makes a difference, and the suggested changes taken into account. It's great to see rare disease patient groups working together to get our voices heard.

We will keep you updated on any progress.

We have been provided with an article published by Diana Ovejero Crespo. Diana is recognised internationally for research into Fibrous Dysplasia and Vitamin D.  It outlines some general advice regarding the benefits of ensuring Vitamin D levels are maintained and a potential COVID-19 impact which is being researched.

We were pleased to announce that the SME News team had awarded FDSSUK a winners place - as the best Not for Profit Organisation Supporting Fibrous Dysplasia 2020. The article has been published now in full with a PDF extract here and can be read online in SME News here. We are extremely proud to have been recognised for the benefits we believe our charity brings to all of our members and those who visit our website or other social media publications.

The Department of Health & Social Care have put this questionnaire out to get feedback on the draft actions that have been developed for the implementation of the UK Rare Disease Framework. We would ask everyone to please take part if you can to ensure your experiences have been presented.

DHSC is inviting responses from across the rare disease community, including people living with a rare disease, carers/ family members.

 

The questionnaire closes at 5pm on 26 November.

Please see the questionnaire here for details