EP14: Rare and Associated Community Love Letters, News, and More

On this Valentine’s episode of Signalise: a #Dazzle4Rare podcast, we’ve got news for Amazon Smile charities, we’ve got a lot of awareness days in the diary, and we’ve got your love letters. 

If you don't have pen and paper handy, not to worry! All the dates mentioned are in the #Dazzle4Rare International Awareness Days calendar. 

 

Links Mentioned: 

• Genetic and Rare Diseases (GARD) - Marfan Syndrome
• SCN8A Syndrome
• Epilepsy Sparks Insights Podcast with Torie Robinson
• Rare Disease Day 28th February

 

You can read the New York Times article by clicking the title," Amazon Axes ‘Smile’ Charity Program, Citing Limited Impact."

 

Love Letters

• David Ross - Rare Disease Men's Mental Health Advocate & Group Leader
• Melissa Van Houten - Gastroparesis: Fighting for Change
• Heidi Edwards - President and Founder at Sisters’ Hope Foundation 
• Susan Foley - Executive Director of HESA and Co-Founder
• Lee Reavey - NCBRS Foundation
• Sue Routledge - Pitt-Hoppkins UK
• Dr Sondra Butterworth PhD., MSc., PGCE., GMBPS. Community Health Psychologist
• Lori Verton - ACMCRN President, Founding Director
• Alan Thomas - Ataxia and Me

---

Don't miss an episode of Signalise! Be sure to ✔️FOLLOW or ✔️SUBSCRIBE via your podcast app of choice. You can also follow #Signalise news on @Dazzle4Rare on Facebook , Instagram , and Twitter. You can find host Kimberly on LinkedIn at @kattague.

 

 

• Download44
• Share