HSP Research Foundation

16/03/2026

The Foundation is listed.

New rare disease pages and resources continue to be developed over time on the Rare Awareness Rare Education (RARE) Portal.

If you are looking for information about a specific rare disease, visit the Rare Disease Directory. Support groups and personal stories are listed for each condition where possible.

Visit rareportal.org.au for more information.

02/03/2026

What a good event for Rare Disease Day. Well done to all.

02/03/2026

To our followers who may not have seen the ARC Webinar on Understanding Neurogenic Bladder on 12 February, here is a link to ARC's website and the recording - if you provide your email address and name they will forward the recording to you.

The session covered various issues like urgency and retention and highlighted the need for people with disabilities to take action and not ignore on the basis of balance issues affecting mobility and the higher risk of falling if rushing to the toilet.

Understanding Neurogenic Bladder An informative session designed to help patients and caregivers understand neurogenic bladder, its causes, symptoms, and treatment options. The webinar covers practical management strategies, and available therapies and referral options and space for patient question...

28/02/2026

Lights for Rare Disease Day 2026

28/02/2026

Today (28 February) is 𝐑𝐚𝐫𝐞 𝐃𝐢𝐬𝐞𝐚𝐬𝐞 𝐃𝐚𝐲! 🌟

Rare Disease Day is the globally coordinated movement for rare diseases, to raise awareness and generate change for the 300 million people worldwide living with a rare disease, their families and carers.

You can show your support of people living with a rare disease by sharing the '𝐈 𝐒𝐮𝐩𝐩𝐨𝐫𝐭 𝐑𝐚𝐫𝐞 𝐃𝐢𝐬𝐞𝐚𝐬𝐞 𝐃𝐚𝐲❤️' pledge. This graphic is available to download in different languages via the official Rare Disease Day website: https://www.rarediseaseday.org/

27/02/2026

Yes, one day to go to Rare Disease Day 2026. Having a rare disease makes you aware of the magnitude of rare diseases which show no favourites for who they affect. Recently watched the Michael Klim story and his rare disease of Chronic Inflammatory Demyelinating Polyneuropathy (CIPD) an acquired autoimmune disorder.

25/02/2026

An opportunity to connect with the global HSP/PLS community for Rare Disease Day.

On Rare Disease Day, Saturday, February 28th, at 9:00 PM CET (2:00 PM CST), the Spastic Paraplegia Foundation (SPF) of the USA will host a special SPF Talks event.

In Australia, the timing will be Sunday 1 March at:
4am (AWST)
6am (AEST)
6.30am (ACDT)
7am (AEDT)

This is a meaningful opportunity for the entire community — patients, caregivers, families, researchers, and advocates — to come together across countries, just as we did for World HSP/PLS Day. That day showed how powerful it is when we gather as one voice. Rare Disease Day gives us another chance to strengthen those connections and stand together.

The main session will be held in English.

https://sp-foundation.org/get-involved/spf-talks/february-28-2026.html

To complete registration, you need to scroll to the bottom of the page and click the red “Register” button.

Join the Global SPF TALKS Rare Disease Day Open Forum, a historic gathering uniting the HSP & PLS community across countries, cultures, and languages. Hosted by the Spastic Paraplegia Foundation, this worldwide Zoom event will bring individuals, families, advocates, clinicians, and researchers toget...

25/02/2026

An event organised for Rare Disease Day for our Australian and New Zealand followers to consider.

🦓 Rare Disease Day 2026: Care Connect Cure is a space for families too.

If you’re wondering whether this event is right for you and your family, the answer is yes.

Attending events can feel overwhelming, especially when you are caring for a child or young person living with a rare condition. The Rare Diseases NSW team have designed Care Connect Cure to feel welcoming, inclusive and supportive for families, not just professionals.

💛 Activities for children and young people

Captain Powers and Captain Smurfette from the Starlight Foundation will be joining us to bring fun, interactive activities for children and young people throughout the morning.

✨ Highlights families may especially value

🗣️ Rachel Callander Workshop (9:30am – 11:00am)

A practical and reflective masterclass exploring compassionate communication, storytelling and ways to reduce trauma and build connection in healthcare and everyday conversations.

🌱 RarePower Interactive Session

Learn about practical initiatives that support families, including Rare Passport, SIBS supports, health literacy tools and new projects helping people get involved and shape change.

💬 Lived experience speakers

Hear directly from people living with rare disease and community leaders sharing real stories about integrated care, connection and advocacy.

🌏 GeneEQUAL session

Discover co-designed resources supporting accessible, respectful and inclusive genetic healthcare for people with intellectual disability and their families.

✔️ Free to attend

✔️ Online access available

✔️ Travel bursaries to help reduce barriers

✔️ Accessibility supports in place

Travel bursary information: https://rarediseasesnsw.au/home/news/regional-nsw-travel-bursaries/

Whether you join in person or online, you are very welcome.

📍 UNSW Health Translation Hub, Randwick

📅 27–28 February 2026

🔗 Register: https://events.humanitix.com/rare-disease-day-2026-care-connect-cure

Please share with families or communities who might benefit from being part of this space.

24/02/2026

A special streaming of a play to acknowledge Rare Disease Day. The streaming commences from Rare Disease Day 28 February (New York time).

"Video stream of Soho Rep’s acclaimed production of WATCH ME WALK, written and performed by Anne Gridley and directed by Eric Ting. WATCH ME WALK is a hilarious, biting, and compassionate new play about disability, pity, injustice, and family mythologies that Hilton Als at The New Yorker said was “a prime example of what we get when autobiographical theatre works.” For Gridley, WATCH ME WALK is “the show [she] never wanted to write”— about her experiences since being diagnosed with Hereditary Spastic Paraplegia (HSP), a rare degenerative neurological disease which her mother and grandmother also had."

Hosted by Soho Repertory Theatre Inc
28 February 2026 to 7 March 2026
New York City, United States, New York City, United States
https://www.sohorep.org/

Click on the following link:
https://www.rarediseaseday.org/event/video-streaming-launch-of-the-play-watch-me-walk-written-and-performed-by-anne-gridley/

Soho Rep provides radical theater makers with production development at key junctures in their artistic practice.

23/02/2026

Hope followers in Australia may be able to see an illuminated site to celebrate Rare Disease Day this Saturday.

21/02/2026

Hearing from young rare disease advocates delivers a powerful message.

19/02/2026

HSP is estimated to account for 600,000 worldwide.