RareDiseaseFdn

Changing the lives of patients affected by rare & undiagnosed diseases through social support, advocacy & treatment-focused research.

[RareDiseaseFdn @rarediseasefdn]

It’s happening next Tuesday October 27! Connect with peers of the #RareDisease community 🍂💛

Our free Glowing Hearts Peer2Peer virtual group is back!

📅 Tuesday October 27th · 4:30–5:30pm PT
🇨🇦 For anyone in Canada
🔗 Sign up #Eventbrite https://t.co/MO8fIc4gNS

[RareDiseaseFdn @rarediseasefdn]

It’s October, a new chance to connect with peers of the rare disease community 🍂💛

Our free Glowing Hearts Peer2Peer virtual group is back!

📅 Tuesday October 27th · 4:30–5:30pm PT
🇨🇦 For anyone in Canada
🔗 Sign up #Eventbrite https://t.co/MO8fIc4gNS

#RareDisease #Peer2Peer

[RareDiseaseFdn @rarediseasefdn]

Got a rare disease research idea? We want to fund it. 🌱

RDF Microgrant applications are open, grants up to $5,000 CAD.

📅 Deadline: November 2nd, 2026
🔗 Apply at https://t.co/gMO220Oo2m

#RareDisease #Microgrant #RareDiseaseResearch #SeedFunding

[RareDiseaseFdn @rarediseasefdn]

Living with a rare disease is hard. Getting support shouldn't be. 💛

Free online counselling for the rare disease community, through our Glowing Hearts Counselling program.

🔗 Sign up at https://t.co/z4YggyWeIH

#RareDisease #MentalHealth #FreeCounselling

[RareDiseaseFdn @rarediseasefdn]

A new season, a new chance to connect. 🍂💛

Our free Glowing Hearts Peer2Peer virtual group returns in September!

📅 Tuesday September 29th · 4:30–5:30pm PT
🇨🇦 Open to anyone in Canada
🔗 Sign up on Eventbrite https://t.co/MO8fIc4gNS

#RareDisease #Peer2Peer #GlowingHearts

[RareDiseaseFdn @rarediseasefdn]

You shouldn’t have to navigate a rare disease journey alone. 💛

Our free Glowing Hearts Peer2Peer virtual group is back!

📅 Monday August 31st · 4:30–5:30pm PT
🇨🇦 Open to anyone in Canada
🔗 Sign up https://t.co/CItTeocWUj

#RareDisease #Peer2Peer #Mentalhealth

[RareDiseaseFdn @rarediseasefdn]

Leg numbness. Difficulty walking. Trouble with bladder function.

Looks like #MS but it could be Hereditary Spastic Paraplegia #HSP a rare condition

A family is crossing Canada to deliver Letters of Hope to the PM. Add yours https://t.co/7XbG0dflPj

#RareDisease

[RareDiseaseFdn @rarediseasefdn]

The Journey of Hope launched today at Canada Place in #Vancouver. 🇨🇦

3.2 million Canadians live with a rare disease. They deserve a cure

This community is walking to #Ottawa to make sure the Prime Minister hears them💛

#JourneyOfHope #RareDisease #RareDiseaseAwareness #canada

[RareDiseaseFdn @rarediseasefdn]

Rare diseases deserve an equal chance. 💙

A family is driving across Canada to prove it, and they're bringing your letters with them. Write yours today. ✍️ and send it to @Spg Hopefoundation Gurmoh

#RareDisease

[RareDiseaseFdn @rarediseasefdn]

Join us for our monthly Peer2Peer Resource Network Group, a safe online space for people living with a rare disease, or families who have a loved one living with one. 💛
Tuesday July 28th at 4:30PM PT, Online

Free tickets https://t.co/3iOfsY4F9m

#RareDisease #Peer2Peer

[RareDiseaseFdn @rarediseasefdn]

We're looking for a Grant Writing volunteer! ✍️

Do you have a passion for formal writing? Help us secure funding for the rare disease community, your words can literally change lives.

👉 Contact us https://t.co/zAKAXNFqYD

#Volunteer #GrantWriting #RareDisease

[RareDiseaseFdn @rarediseasefdn]

Diarrhea. Stomach cramps. Abdominal bloating.

Sounds like IBS, but it could be Whipple's Disease, an ultra-rare bacterial infection affecting just 5 in 1,000,000 people.

The surprising tell? Joint pain that resembles arthritis. 🫀

#RareDisease #WhipplesDisease #IBS

[RareDiseaseFdn @rarediseasefdn]

25 years ago, Alynne was born with a rare chromosomal deletion. Her father Owen, former RDF Board Chair, shares their family's journey, the hard parts, and the unexpected joy. 💛

A story worth reading.

🔗 https://t.co/bcTQDZGlcd

#RareDisease #RareButNotAlone

[RareDiseaseFdn @rarediseasefdn]

What if the disease you spent your life fighting was also your own? Dr. Nancy Wexler's new memoir My Life, My Science follows her lifelong quest to find a cure for Huntington's disease, including her own diagnosis. 💙 📖 https://t.co/QkrPjk469T #RareDisease #HuntingtonsDisease

[RareDiseaseFdn @rarediseasefdn]

You don't have to do this alone 💛

Join our free Glowing Hearts Peer2Peer virtual group, open to the Rare Disease community in Canada living with or caring for someone with a rare disease.

📅 Tuesday June 23rd: 4:30–5:30pm PT
🔗 https://t.co/266ktQJpwH

#RareDisease #Peer2Peer

[RareDiseaseFdn @rarediseasefdn]

Swelling. Difficulty breathing. Nausea.

Sounds like an allergic reaction, but it could be Hereditary Angioedema, a rare genetic disorder affecting 1–2 in 100,000 people. Key difference? It usually doesn't cause hives. 🫀

#RareDisease #HereditaryAngioedema #Allergies #Asthma

[RareDiseaseFdn @rarediseasefdn]

Today is National Cancer Survivors Day 🖤

The symptoms: swollen lymph nodes, fever, night sweats could sound like #Lymphoma (blood cancer) but it could be #CastlemanDisease, a #RareDisease affecting 10–16 in 1,000,000 people.

We stand with every survivor 💛

#CancerSurvivorsDay

[RareDiseaseFdn @rarediseasefdn]

It’s Mental Health Awareness Month and our FREE Glowing Hearts video series is now available, with practical wellness tools designed for the rare disease community.

🎞️ Watch now!

🔗 https://t.co/z4YggyWeIH

#MentalHealth #RareDisease #MentalHealthAwarenessMonth

[RareDiseaseFdn @rarediseasefdn]

Got a rare disease research idea? We want to fund it. 🌱

RDF Microgrant applications are now open, grants up to $5,000 CAD.

📅 Deadline: June 1, 2026
🔗 Link in bio

#RareDisease #Microgrant #RareDiseaseResearch

[RareDiseaseFdn @rarediseasefdn]

Confusion. Depression. Brain fog

Sounds like Fibromyalgia but it could be Dercum's Disease, a rare condition affecting 68 in 1,000,000 people. Key difference: painful fatty growths beneath the skin

RareDiseases wear common disguises💛

#RareDisease #DercumsDisease #Fibromyalgia