#RareCare
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addisonsdisease.bsky.social
📣 Have your say on the Rare Disease Framework in England! RareCare have launched a survey to better understand the real-life experiences of people affected by rare conditions, such as Addison's and adrenal insufficiency.

Complete the survey to take part 👉 form.jotform.com/252324831142044
A promotional poster from RareCare, encouraging people in England to take part in a survey about the UK Rare Disease Framework. The poster reads: "Your Opinion Matters! Have Your Say on the Rare Disease Framework in England! If you are a person living with a rare disease, a carer, or a professional working in the rare disease space, please share your views." It explains that: "This survey is being run by RareCare (NIHR funded policy research project) to understand the real-life impact of the UK Rare Disease Framework and England’s Action Plans!" The pale blue poster includes an illustration of a pair of hands using a mobile phone. The phone is being held in one hand, while the other is used to answer questions on the screen. A QR code is at the bottom of the poster under the text: "Scan the QR code to start the survey!" In the bottom right corner is the RareCare logo.
November 27, 2025 at 9:01 AM
ohsterling.bsky.social
Cost assistance for those with rare diseases: rarediseases.org/patient-assi...
RareCare Patient Assistance Programs – National Organization for Rare Disorders
rarediseases.org
December 17, 2025 at 9:27 PM
rarediseaseadvisor.bsky.social
📆 4/4 is #IgG4RD Awareness Day

Today we recognize all those affected and share Donna Shipp’s story on the Rare Care podcast. A former nurse, she was misdiagnosed with cancer for 6 months before receiving the correct diagnosis.

🎧 Listen: https://bit.ly/4c9t963

#RareDisease #RareCare #MedSky
4/4 is IgG4-RD Awareness Day. The image promotes an interview with Donna Shipp about their IgG4-RD patient journey. Includes "Rare Care" podcast graphics and the text, "Listen Now.
April 4, 2026 at 8:12 PM
consiliumsci.bsky.social
🧬 Check out the latest RareCare blog post titled 'The Specialness of Rarity' by Mark Sheehan

Read the full article here: www.rarecare.online/post/the-spe...
The Specialness of Rarity
Rare diseases, by definition, affect only a small fraction of the population. This rarity raises an important question: are these diseases “special” in a way that justifies distinct treatment or consi...
www.rarecare.online
January 31, 2025 at 2:12 PM
nordrare.bsky.social
Tomorrow is #IPKUDay! Check out this great program from the NORD Rare Disease Center of Excellence at @emorygenetics.bsky.social.

NORD offers financial assistance to #PKU patients in need. Apply here: bit.ly/4czUzRE

If you live in #Canada, learn about the Canadian PKU Registry at pkuregistry.ca.
NORD RareCare Phenylketonuria (PKU) Patient Assistance Program may help cover the following PKU-related costs: health insurance premiums, deductibles and copays; out-of-pocket costs of appointments and tests; physician-prescribed medical foods and formulas; and travel and lodging expenses for PKU medical appointments. Apply today. The Canadian PKU Registry. Join now! What is a patient registry? A database that stores info about a group of patients who have the same disease. What should I expect? You and your caregiver will complete surveys about your health. Who can Join? Caregivers sign up on behalf of patients 18 or younger receiving care in Canada. Participation is voluntary. Email questions to pkuregistry@cheo.on.ca. A project of NORD, CHEO Research Institute, CANPKU+, and Inform Rare.
June 27, 2025 at 4:25 PM
amyloidosisuk.bsky.social
The Consilium Scientific Team are excited to announce the launch of the RareCare National Survey. This aims to gather real-world experiences to help shape future policy on diagnosis, care, treatment and support for those affected by rare conditions.

Find out more:

amyloidosisuk.org/the-rarecare...
The RareCare National Survey
The Consilium Scientific Team have launched the RareCare National Survey, a key part of their work to evaluate & improve rare disease services in England
amyloidosisuk.org
November 7, 2025 at 1:53 PM
dcaction.bsky.social
The RareCare survey is also open to Healthcare Professionals working in Rare Diseases
October 30, 2025 at 3:49 PM
dcaction.bsky.social
The Department of Health and Social Care want to understand the real life experiences of people who live with Rare Conditions. Can you help by completing the RareCare survey? form.jotform.com/252324831142...
National Survey Questionnaire
Please click the link to complete this form.
form.jotform.com
October 30, 2025 at 3:40 PM
consiliumsci.bsky.social
On this Rare Disease Day we celebrate the diversity of the people and organisations who are working hard to improve the lives of those living with rare disease rarediseaseday.org

We are delighted to be working with such diversity in the RareCare project! 💊 #RareDiseaseDay
February 28, 2025 at 4:14 PM